Core Information Standard: Final Report

Core Information Standard: Logical Model - Updated April 2026 (EXCEL)

Core Information Standard: Release Notes - Updated April 2026

Core Information Standard: Hazard Log - Updated April 2026 (EXCEL)

Core Information Standard: Implementation Guidance

Core Information Standard: - Updated April 2026 (JSON)

Core Information Standard: Survey Report

Core Information Standard: Business Rules (EXCEL)

Core Information Standard: Dentistry Use Case Example

Core Information Standard: Optometry Use Case Example

Core Information Standard: Clinical Safety Case - Updated April 2026

Core Information Standard: Hazard Log (EXCEL)

The core information standard defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using services.

<p>The Core Information Standard defines a set of information that may be shared between systems in different sites and settings, and with professionals and people using services. It is a key enabler of integrated, joined up care. </p>
<br />
<br />
<p>The information accessed will differ depending on who is accessing it, for what reason and the wishes of the individual receiving care. Its use will be decided locally. NHS England specifies the Core Information Standard as the standard that all shared care records should conform to. </p>
<br />
<br />
<p><b>About this standard</b></p>
<p>The Core Information Standard defines a set of information which should be common to most systems and would be a merge of records drawn from different settings. It sets out what information should be shared between organisations and geographies and could be used to populate shared care records. The expectation is that this information would be read only, at least initially. </p>
<br />
<br />
<p><b>The standard will enable health and care professionals to: </b></p>
<ul>
<li>view a consolidated medication record</li>
<li>run algorithms where there may be gaps in care</li>
<li>identify individuals at risk</li>
<li>proactively notify other health and care professionals</li>
</ul>
<br />
<p>Local implementations will need to define different ‘views’ in their shared care record of the information for different professionals and other users, including people who use services, and local use cases based on the information governance framework which will be published by NHS England.</p>
<br />
<br />
<p>These views should define what information is needed by a professional (or a person) in particular circumstances. How the information is presented to professionals and people in a shared care record will be dependent on the local systems in place, but it should be presented in such a way as to provide maximum benefit for different users (in different roles) in each given use case.</p>
<br />
<br />
<p>A view of a shared care record conformant with the Core Information Standard has been approved as appropriate and complementary for professionals working in pharmacy, optometry, dentistry, ambulance and community services. The use of a national common core information standard across all services will complement the introduction and expansion of local ICS shared care record developments.</p>
<br />
<br />
<p><b>Scope</b></p>
<p>The Core Information Standard is a thoroughly researched and validated definition of the standard, tested with citizens, patients, carers and health and social care professionals.</p>
<br />
<br />
<b>It defines:</b>
<ul>
<li>a core set of information relevant for direct care across a variety of settings.</li>
<li>a set of information that could potentially be shared with professionals depending on their role and circumstances.</li>
<li>a definition of the information professionals and people who use services have told us they want to see in a Shared Care Record.</li>
<li>an information set that is readily translatable across clinical settings e.g. mental health to accident and emergency; acute care to social care etc.</li>
<li>a blueprint for local implementations to draw from for their own local sources depending on local requirements. Local implementers may add to the core information.</li>
</ul>
 <br />
<br />
<p><b>The Core Information Standard is not</b></p>
<ul>
<li>a definition of an exhaustive clinical or care record / history.</li>
<li>a definitive set of information about the person’s current status – no clinical record is this and clinical information needs to be understood by the professional reading it as such.</li>
<li>a prescriptive definition of what must be included – this will be determined ultimately by local projects and specific use cases.</li>
<li>a physical data model – FHIR profiles to support interoperability of the data between systems will be commissioned by NHS England.</li>
<li>a definition of what information professionals should be able to see or change – this will be set out in NHS England’s Information Governance Framework and Role- Based Access Control work.</li>
<li>a definition of how information should be presented to professionals – what is presented, the depth of history and how the information is viewed/accessed should be defined locally.</li>
<li>a definition of a shared care record.</li>
<li>a definition of how the content should be sourced, updated, de-duplicated and normalised i.e. the source data and its processing.</li>
<li>additions or adjustments needed to successfully implement locally which must be defined in local projects.</li>
</ul>
<br />
<br />
<p><b>How it works</b></p>
<p>The standard can be seen as a broad set of ‘flexible’ components (or sections), a sub-set of which will be relevant in different situations for different use cases. It has been designed as a generic standard, not for specific use cases. The expectation is that local health and care localities will prioritise their local use cases and build local interoperability informed by the Core Information Standard. </p>
<br />
<br />
<p>Use of the Core Information Standard in community settings: pharmacy, dentistry, optometry, ambulance and community services (PODAC): 
PRSB has validated the use of the Core Information Standard for shared care records to professionals working in pharmacy, optometry, dentistry, ambulance and community services, following widespread consultation with clinicians, people using these services and a range of PRSB stakeholders. </p>
<br />
<br />
<p>This will enable professionals working in these care settings to have access to the right information at the right time to provide clinically safe and effective care, subject to appropriate information governance controls. Using the standard in these settings should improve care and outcomes for people, and it should improve the working lives of professionals who won’t need to create workarounds or log into multiple systems to ensure they have a complete picture of a person’s current and relevant care history, before starting treatment. <a href="https://dzffzywis6qj0.cloudfront.net/prsb-assets/7-Core%20information%20standard/2022-08-23%20v1.0%20Core%20Information%20Standard%20use%20in%20five%20community%20settings%20PODAC.pdf">View the report </a></p>
<br />
<br />
<p><strong>The changes made, in April 2026, to the PRSB Core Information Standard relating to sex and gender were undertaken as a response to Professor Alice Sullivans report <a href="https://www.gov.uk/government/publications/independent-review-of-data-statistics-and-research-on-sex-and-gender">Independent review of data, statistics and research on sex and gender - GOV.UK</a>, which noted safety issues in data sets and clinical records managed both by NHSE and PRSB.  The work was agreed alongside Prof Sullivan herself, and implemented by the PRSB into their core standard earlier this year.</strong></p>


First published August 2021. This is the implementation guide to support the use of the Core Information Standard.

## Acknowledgements

### The Professional Record Standards Body
The independent Professional Record Standards Body (PRSB) was registered as a community interest company in May 2013 to oversee the further development and sustainability of professional record standards. Its stated purpose in its Articles of Association is: “to ensure that the requirements of those who provide and receive care can be fully expressed in the structure and content of health and social care records”. Establishment of the PRSB was recommended in a Department of Health Information Directorate working group report in 2012.

### Copyright
You may use and re-use the information featured in this document (not including logos or images) free of charge in any format or medium, under the terms of the Open Government Licence. Any enquiries regarding the use and re-use of this information resource should be sent to: [support@theprsb.org](mailto:support@theprsb.org). Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned.

Information and content © PRSB 2019

Professional Record Standards Body
7 - 145 Great Dover Street, London,
SE1 4YR
[www.theprsb.org](http://www.theprsb.org)

Community Interest Company No 8540834

### Revision History
<table>
<thead>
<tr>
<th>Version</th>
<th>Date</th>
<th>Summary of Changes</th>
</tr>
</thead>
<tbody>
<tr>
<td>1.0</td>
<td>10/07/2019</td>
<td>Publication version</td>
</tr>
<tr>
<td>1.1</td>
<td>25/10/2019</td>
<td>Updated sections: purpose of document; pregnancy status guidance</td>
</tr>
<tr>
<td>1.2</td>
<td>19/03/2020</td>
<td>Update to guidance for ‘sex’ and ‘gender’ following a series of calls with NHS Digital.</td>
</tr>
<tr>
<td>1.4</td>
<td>19/08/2021</td>
<td>Updated due to updated to core information standard v2</td>
</tr>
<tr>
<td>2.0.1</td>
<td>28/04/2026</td>
<td>Sex and gender section updated. </td>
</tr>
</tbody>
</table>

### Reviewers
This document was reviewed by the following people:

<table>
<thead>
<tr>
<th>Reviewer name</th>
<th>Title / Responsibility</th>
</tr>
  <tr>
    <td>PRSB Assurance Committee</td>
    <td>PRSB Assurance Committee</td>
  </tr>
  <tr>
    <td>Helene Feger</td>
    <td>Director of strategy, communications and engagement, PRSB</td>
  </tr>
  <tr>
    <td>Lorraine Foley</td>
    <td>CEO, PRSB</td>
  </tr>
  <tr>
    <td>Martin Orton</td>
    <td>Director of Delivery &amp; Development, PRSB</td>
  </tr>
  <tr>
    <td>John Farenden</td>
    <td>Senior Programme Lead, Architecture Team, NHS England</td>
  </tr>
  <tr>
    <td>Gareth Thomas</td>
    <td>Greater Manchester LHCR Clinical Lead, Consultant in Intensive Care Medicine and Anaesthesia<br>Group Chief Clinical Information Officer<br>Senior Responsible Officer, Integrating Care Locally Programme</td>
  </tr>
</thead></table>

### Approved by

This document was approved by the following:

<table>
  <tbody><tr>
    <td>Name</td>
    <td>Date</td>
    <td>Version</td>
  </tr>
  <tr>
    <td>Project Board</td>
    <td>26/06/19</td>
    <td>0.1</td>
  </tr>
  <tr>
    <td>PRSB Assurance Committee</td>
    <td>11/07/19</td>
    <td>0.3</td>
  </tr>
  <tr>
    <td>Dr John Robinson, Clinical Safety Officer</td>
    <td>19/12/2019</td>
    <td>1.2</td>
  </tr>
</tbody></table>

### Glossary of Terms

<table>
  <tbody><tr>
    <td>Term / Abbreviation</td>
    <td>What it stands for</td>
  </tr>
  <tr>
    <td>A&amp;E</td>
    <td>Accident and Emergency</td>
  </tr>
  <tr>
    <td>AoMRC</td>
    <td>Academy of Medical Royal Colleges</td>
  </tr>
  <tr>
    <td>CCG</td>
    <td>Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>CCIO</td>
    <td>Chief Clinical Information Officer</td>
  </tr>
  <tr>
    <td>CDGRS</td>
    <td>Clinical documentation and generic record standards</td>
  </tr>
  <tr>
    <td>CIO</td>
    <td>Chief Information Officer</td>
  </tr>
  <tr>
    <td>CPAG</td>
    <td>Clinical and Professional Advisory Group</td>
  </tr>
  <tr>
    <td>CRO</td>
    <td>Clinical Responsible Officer</td>
  </tr>
  <tr>
    <td>CSP</td>
    <td>Care and support plan. Used interchangeably with DCSP</td>
  </tr>
  <tr>
    <td>DCB</td>
    <td>Data Coordination Board</td>
  </tr>
  <tr>
    <td>DCSP</td>
    <td>Digital care and support plan. Used interchangeably with CSP</td>
  </tr>
  <tr>
    <td>EHR</td>
    <td>Electronic Health Record</td>
  </tr>
  <tr>
    <td>EPR</td>
    <td>Electronic Patient Record</td>
  </tr>
  <tr>
    <td>ETTF</td>
    <td>Estates and Technology Transformation Fund</td>
  </tr>
  <tr>
    <td>FHIR</td>
    <td>Fast Healthcare Interoperability Resources</td>
  </tr>
  <tr>
    <td>GP</td>
    <td>General Practitioner</td>
  </tr>
  <tr>
    <td>GPSoC</td>
    <td>GP System of Choice</td>
  </tr>
  <tr>
    <td>HCPG</td>
    <td>Health and Care Professionals Group</td>
  </tr>
  <tr>
    <td>HIG</td>
    <td>RCGP Health Informatics Group</td>
  </tr>
  <tr>
    <td>HIU</td>
    <td>Health Informatics Unit (Royal College of Physicians)</td>
  </tr>
  <tr>
    <td>HL7</td>
    <td>Health Level 7</td>
  </tr>
  <tr>
    <td>HLP</td>
    <td>Healthy London Partnership</td>
  </tr>
  <tr>
    <td>HSSF</td>
    <td>Health and Systems Support Framework</td>
  </tr>
  <tr>
    <td>ICR</td>
    <td>Integrated care record. Used interchangeably with IDCR</td>
  </tr>
  <tr>
    <td>IDCR</td>
    <td>Integrated digital care record. Used interchangeably with ICR</td>
  </tr>
  <tr>
    <td>LDR</td>
    <td>Local Digital Roadmap</td>
  </tr>
  <tr>
    <td>LHCR</td>
    <td>Local Health and Care Record</td>
  </tr>
  <tr>
    <td>Metadata</td>
    <td>A set of data that describes and gives information about other data</td>
  </tr>
  <tr>
    <td>NIB</td>
    <td>National Information Board</td>
  </tr>
  <tr>
    <td>NHS</td>
    <td>National Health Service</td>
  </tr>
  <tr>
    <td>NHSCC</td>
    <td>NHS Clinical Commissioners</td>
  </tr>
  <tr>
    <td>NHSD</td>
    <td>NHS Digital</td>
  </tr>
  <tr>
    <td>NWL</td>
    <td>North West London</td>
  </tr>
  <tr>
    <td>NWL CCGs</td>
    <td>North West London Collaboration of Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>PID</td>
    <td>Project Initiation Document</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Professional Record Standards Body</td>
  </tr>
  <tr>
    <td>RCGP</td>
    <td>Royal College of General Practitioners</td>
  </tr>
  <tr>
    <td>RCN</td>
    <td>Royal College of Nursing</td>
  </tr>
  <tr>
    <td>RCOT</td>
    <td>Royal College of Occupational Therapists</td>
  </tr>
  <tr>
    <td>RCP</td>
    <td>Royal College of Physicians</td>
  </tr>
  <tr>
    <td>SCR</td>
    <td>Summary Care Record</td>
  </tr>
  <tr>
    <td>SNOMED-CT</td>
    <td>Systematized Nomenclature of Medicine - Clinical Terms</td>
  </tr>
  <tr>
    <td>SOCITM</td>
    <td>The Society for Information Technology Management</td>
  </tr>
  <tr>
    <td>STP</td>
    <td>Sustainability and Transformation Plan</td>
  </tr>
  <tr>
    <td>ToC</td>
    <td>Transfer of Care</td>
  </tr>
  <tr>
    <td>WSIC</td>
    <td>Whole Systems Integrated Care</td>
  </tr>
</tbody></table>

### 1.1 Background
NHS England commissioned the Professional Record Standards Body to define what information should be shared between organisations and geographies, professionals and people using services to support health and social care. It is intended that this standard will be used across the UK.

The core information standard, described in this document and related documents that can be found on the PRSB [website](website), informs the technical specifications to be commissioned by NHS England and deployed within local implementations to ensure the information defined by the standard can be shared digitally.

### 1.2 Purpose of this document

This document provides guidance to support the implementation of the core information standard for people involved in developing, deploying and using systems which exchange information pertaining to health and care. The document provides general guidance as well as guidance for each specific part of the standard.

The guidance was developed on the basis of extensive consultation described in the final project report. However, the guidance will be refined and updated regularly as it is anticipated that there will be further findings and feedback as the standard is actually implemented.

PRSB has carried out a clinical safety review in accordance with DCB0129, which is detailed in the Clinical Safety Case (Core Information Standard Clinical Safety Case Report v1.1) and accompanying Hazard log v1.1. This guidance should be used in conjunction with the CIS hazard log and CIS clinical safety case report. This is further discussed under section 2.2. Risk Mitigation.

### 1.3 Audience – who is this document for?

This guidance is intended for anyone implementing the core information standard. This will include project teams (including clinicians, other care professionals and people who use services) involved in building systems that will use the core information standard and system suppliers.

### 1.4 The Core Information Standard

The standard defines a set of information that can potentially be shared between systems in different sites and settings, with professionals and people using services. What information is accessed will differ depending on who is accessing it, for what reason and the wishes of the person the information is about. Access will be based on the national Information Governance Framework being developed by NHS England in parallel with this work.

The core information standard itself is based on the PRSB’s “Standards for the Clinical Structure and Content of Health and Care Records” (PRSB, 2018) which can be found [here](here).

#### 1.4.1 What it is

The core information standard is:

*   a core set of information relevant for direct care (across a variety of settings).
*   a set of information that could potentially be shared with professionals depending on their role and circumstances.
*   a definition of the information professionals and people who use services have told us they want to see in a shared record.
*   an information set that is readily translatable across clinical settings e.g. mental health to accident and emergency; acute care to social care etc.
*   a blueprint for local implementations to use to draw from for their own local sources depending on local requirements. Local implementers may add to the core information.
*   a thoroughly researched and validated definition of the core information standard tested with citizens, patients, carers and health and social care professionals.

#### 1.4.2 What it's not

*   a definition of an exhaustive clinical or care record / history.
*   a definitive set of information about the person’s current status - no clinical record is ever this and clinical information needs to be understood by the professional reading it as such.
*   a prescriptive definition of what must be included – this will be determined ultimately by local projects and specific use cases.
*   a logical or physical data model. A logical data model will be developed by NHS Digital. FHIR profiles to support interoperability of the data between systems will be commissioned by NHS England.
*   a definition of what information professionals should be able to see or change (which will be set out in NHS England’s Information Governance Framework and Role Based Access Control work).
*   a definition of how information should be presented to professionals (what is presented and how much information (history) and how it is viewed/accessed), which should be defined locally.
*   a definition of a shared care record.
*   a definition of how the content should be sourced, updated, de-duplicated and normalised i.e. the source data and its processing.
*   additions or adjustments needed to successfully implement locally which must be defined in local projects.

It is recognised that full interoperability of systems is still some way off in most clinical environments and so what is likely at least at first is a data ‘pull’ from source systems without direct write back into those systems (see clinical safety case).

#### 1.4.3 The approach to the development of the core information standard

The approach to the development of the core information standard is set out in the Final Report which can be found [here](#).

## 2 General guidance

The standard can be seen as a broad set of “flexible” components (or sections), a sub-set of which will be relevant in different situations for different use cases. It has been designed as a generic standard, not for specific use cases. The expectation is that local health and care localities will prioritise their local use cases and build local interoperability informed by the core information standard.

The sections in the standard differ in terms of how the elements they contain relate to one another. Some, for example ‘legal information’, are sets of independent ‘elements’ or data items, grouped under logical headings. Other sections, for example ‘medications and medical devices’, are sets of related elements with dependencies. A ‘record entry’ within a section is used to indicate that elements are related to one another. Some sections may also include clusters, which are groups of elements within a section that relate to one another. Clusters are similar to a record entry but occur within a single record entry and may repeat for a record entry.

Each element, cluster, record entry and section will have a statement of cardinality, whether there can be zero, one or many entries. They also have a statement of conformance - whether the item is ‘Mandatory’, ‘Required’ or ‘Optional’. An explanation of the meaning of these terms appears in the table below.

Since different components will be populated by different care settings a minimal number of sections and clusters have been defined as ‘Mandatory’. The mandatory sections are Person demographics and GP practice. This is the minimum amount of information required for a record about a person to exist. Many other sections are set to ‘Required’. However, some of the elements within a ‘Required’ section may be ‘Mandatory’. For example, if a record of a medication is shared, ‘Medication name’ is ‘Mandatory’ and must be shared.

The information model includes the following information:

Table 1 – the core information standard data structure

<table>
<thead>
<tr>
<th>Information Components</th>
<th>Model Description</th>
</tr>
</thead>
<tbody>
<tr>
<td>Section</td>
<td>A section groups together all the information related to a specific topic e.g. ‘Medications and medical devices’ and ‘Person demographics’. It is the highest level to logically group data elements that may be independent or related. For example:
<ul>
<li>‘Legal information’ includes a set of independent elements or information items, grouped in a logical section.</li>
<li>‘Medications and medical devices’ includes sets of related elements with dependencies between the elements.</li>
</ul>
</td>
</tr>
<tr>
<td>Record entry</td>
<td>A record entry within a section is used where a set of information is repeated for a particular item, and there can be multiple items. For example, for each medication there is a set of information associated with that medication. Other examples are allergies or adverse reactions and procedures.</td>
</tr>
<tr>
<td>Cluster</td>
<td>This is a set of elements put together as a group and which relate to each other; e.g. medication course details cluster which is the set of elements describing the course of the medication.</td>
</tr>
<tr>
<td>Element</td>
<td>The data item. An element can appear in one or more sections e.g. name,</td>
</tr>
  <tr>
    <td>Information model rules and instructions</td>
    <td>Explanations</td>
  </tr>
  <tr>
    <td>Description</td>
    <td>This is the description of the section, record entry, cluster or element. For an element, it describes the information that the element should contain in as plain English as possible.</td>
  </tr>
  <tr>
    <td>Cardinality</td>
    <td>Each section, record entry, cluster and element will have a statement of cardinality. This clarifies how many entries can be made i.e. zero, one or many entries. The number of records expected and allowed are displayed as:<br>0……* = zero to many record entries are allowed<br>0……1 = zero to one record entry is allowed<br>1……1 = one record is expected<br>1……* = one to many records are expected<br>For example, the ‘Medications and medical devices’ section may have zero to many medication item records in it and is displayed as 0……*.</td>
  </tr>
  <tr>
    <td>Conformance</td>
    <td>Conformance defines what information is ‘mandatory’, ‘required’ or ‘optional’ and applies to sections, record entries, clusters and elements.<br>The IT system must be developed to handle all the information elements that are defined in the Standard but not all the information is required for every individual record or information transfer.<br>The following set of rules apply to enable implementers to cater for the end users (senders and receivers) requirements:<ul><li>Mandatory – the information must be included</li><li>Required – if it exists, the information must be included</li><li>Optional – a local decision is made as to whether the information is included</li></ul><br>These rules apply at all levels and give the flexibility to allow local clinical or professional decisions on some information that is included, while being clear on what is important information to include.<br>For example, a person subject to a referral may have many assessments, but not all of these will be relevant to the referral. The conformance can be used to allow just relevant assessments to be included.<br>Assessment Section – Required – i.e. its important information you must include if you have it.<br>Record entry level – Optional – allows a local decision on what assessments are included, so only relevant ones are included based on clinical or professional needs.<br>Assessment elements – Conformance set on the normal basis of which elements for an assessment are mandatory, required or optional.<br><strong>NB:</strong> It is permitted to upgrade a conformance rule but not</td>
  </tr>
  <tr>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>Valuesets</td>
    <td>Valuesets describe precisely how the information is recorded in the system and communicated between systems. This is required for interoperability (for information to flow between one IT system and another). The information can be text, multi-media or in a coded format. If coded it can be constrained to SNOMED CT and specific SNOMED CT reference sets, NHS Data Dictionary values or other code sets.</td>
  </tr>
</tbody></table>

### 2.1 How we expect the core information standard to be used

What is defined is a set of information which should be common to most systems and would be an amalgamation of records drawn from different settings. The expectation is that this information would be read only, at least initially. It sets out what information should be shared between organisations and geographies and could be used to populated shared care records. Local implementations will need to define different ‘views’ in their shared care record of the information for different professionals (and other users, including people who use services) and local use cases based on the information governance framework which will be published by NHS England in due course. These views should define what information is needed by a professional (or person) in particular circumstances. How the information is presented to professionals and citizens in a shared care record will be dependent on the local systems in place but it should be presented in such a way as to provide maximum benefit for different users (in different roles) in each given use case.

### 2.2 Risk Mitigation

We recommend system suppliers and health organisations apply further mitigations when incorporating the CIS in a local care record, by addressing the risks that have been flagged in the accompanying clinical safety case report and hazard log in order to reduce the risk scores to 2, or better than human transcription alone when carrying out clinical risk assessments and developing safety cases with respect to DCB0129 and DCB0160.

### 2.3 Information Governance

Sound principles of information governance and respecting the privacy of people and their information is paramount. NHS England is developing a national Information Governance framework which needs to be considered alongside the core information standard when planning implementation.

### 2.4 Context of the information

Key to the proper reading and comprehension of shared information is some understanding of the context in which the data were originally recorded. It is vital for clinical use of the data that all contextual information must be maintained and should not be lost on exchange or import of information. So, for example, where a diagnosis was made during an A&amp;E attendance, the diagnosis should be linked to that A&amp;E attendance.

The core information standard does not define all possible linkages between different components of information e.g. the diagnosis and the attendance. This will be defined in the logical data model, FHIR profiles and in the local shared care records.

However, following consultation and safety case review we arrived at the following key contextual data which need to be shared:

1.  **‘Performing Professional’** which has various attributes, name, role, specialty, organisation of the professional that, for example, performed the procedure or administered the vaccination etc. It might be that the actual professional is not known however the organisation and specialty are known and should therefore be included as contextual information.
2.  **‘Person completing record’** - which is the person that actually recorded the information and again has various attributes name, role, speciality and organisation and the date that the record was completed.
3.  **Location** - the place in which the activity took place e.g. a procedure was performed.
4.  **Date** - the date on which the activity took place e.g. then date the procedure was performed. In some cases, this would be start and end dates e.g. of child protection plans.

Note that although both ‘Performing professional’ and ‘Person completing record’ contain the element ‘Speciality’ it is recognised that this only applies to some professionals so only needs to be included where relevant.

The principle applied in the information model is that where it is important (from a professional perspective) to know who undertook the activity and who recorded the activity, ‘Performing professional’ and ‘Person completing record’ will be included in the model. For every item of information shared it is important that an audit trail is recorded (even if not explicitly stated in the information model). This is set out below.

### 2.5 Time stamp and audit trail

Each record entry will need to be time stamped from the source system with date and time recorded and the identity of the person making the record. This needs to be viewable in the records themselves where appropriate and via a full audit trail which may be viewable by the end user to enhance transparency.

### 2.6 History

The core information standard does define the requirements for history to be shared. It would be expected that relevant history of the information would be made available within a shared care record as it would provide important contextual information. Local areas would be expected to define the requirements for history.

### 2.7 Data Quality

Data quality and accuracy of coded data entry should be managed in local ‘source’ systems that will feed the shared core information.

### 2.8 Links to other records and documents

The person may have multiple detailed records or documents held on local systems, e.g. there may be a mental health record for a person at a particular trust or there may be other shared care records such as a maternity record or a healthy child record. The National Record Locator Service will, in due course, hold the links to the person’s records that reside in multiple different systems. The core information standard does not define all these possible links. It is expected that the local areas will define the requirements for accessing other records or documents, where applicable and provide access through the shared care record for authorised professionals.

### 2.9 Use of terms

The term ‘role’ has been consistently used rather than ‘designation’ throughout the standard to apply to the role the professional had in a particular activity. Role is the term used in the NHS data dictionary. We have used the term ‘organisational role’ to mean the role the professional has in the organisation they work for.

Some clusters such as referrer details have elements for one or more of specialty, team, service and department. This is to allow for all situations across health and care where different terms are required. Where possible specialty and service should be used and coded as detailed in the value set for the element.

### 2.10 Coding

The *Personalised Health and Care 2020 framework for action* ([https://www.gov.uk/government/publications/personalised-health-and-care-2020](https://www.gov.uk/government/publications/personalised-health-and-care-2020)) recommends the use of SNOMED CT and the dictionary of medicines and devices (dm+d). Local decisions need to be made about when these codes are to be used, depending on local system functionality and plans. The ambition is for SNOMED CT and dm+d to be the only clinical coding schemes in use in the NHS by 2020.

### 2.11 Accessibility

Attention must be paid in the design of user interface for viewing the core information complying with the NHS England Accessible Information Standard ([https://www.england.nhs.uk/ourwork/accessibleinfo/](https://www.england.nhs.uk/ourwork/accessibleinfo/)). This sets out the rules for accessible patient information in patient literature and clinical systems.

### 2.12 Other dependencies

The implementation of the core information standard is dependent on the following:

*   The national Information Governance Framework with nationally agreed role-based access controls and legitimate relationships being developed by NHS England.
*   The logical data model and technical messaging standards FHIR profiles (to support the transfer of information between local health and care systems).

### 3.1 Person demographics

This section contains the person’s demographic and contact details including key identifiers (e.g. name, date of birth, sex at birth, NHS number, address etc. It also includes a person’s gender identity and pronouns, where stated. 
*   NHS number (or equivalent, e.g. CHI number in Scotland), is likely to be the primary identifier however existing national guidance should be followed, including how to handle patients without an NHS number, for example, overseas visitors.
* The PDS (Personal Demographics Service) should be used as the source of this information. The mandatory information in this section is person’s name, date of birth, sex at birth and address. There can be multiple addresses associated with a person including temporary and correspondence addresses.
* To improve the accuracy of the organ and tissue donation element systems should link directly to the organ donation register where possible.

#### 3.1.1. Sex and Gender

* Sex at birth (observed): The phenotypic sex of the person. This is as observed by clinical examination and assessment at birth. Where there is no health and care record from birth, and clinical examination and assessment is not possible, this can be stated by the person or proxy.
* Administrative gender: This is the ‘Person Administrative Gender’ held on the Personal Demographics Service (PDS).

    * This is a legacy data item for England only to represent the data held on the Personal Demographics Service (PDS). NHS England is reviewing the data items in PDS so this will be replaced.
    * This data item should be read-only. 
    * In the majority of cases ‘Administrative gender’ and ‘Sex at birth (observed)’ would be the same. However, in some cases displaying both ‘Administrative gender’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status. 
	
* Gender identity: The person's stated gender identity.
    * Gender identity should ONLY be recorded if a person has a gender identity and wants it recorded in their healthcare record and a clinician decides it is appropriate to record it. If gender identity has been recorded it should be shared.
    * The term ‘gender identity’ refers to some people’s sense that they identify as a member of the male or female sex or as neither (or something else), particularly when this identity is different from their sex at birth. It refers to how individuals understand themselves. Gender identity is always expressed by the person themselves.
    * This is a legacy value set. NHS England is reviewing the value sets so this will change.
    * Displaying both ‘Gender identity’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status.
    * Additional information about gender identity: Any additional information stated by the person about their gender identity.
    * Information about gender identity should ONLY be recorded if a person has a gender identity and wants additional information about it recorded in their healthcare record and a clinician decides it is appropriate to record it.
    * If additional information about a person’s gender identity has been recorded it should be shared.

* Pronouns: The person's stated pronouns.
    * Pronouns should ONLY be recorded if a person wants their pronouns recorded in their healthcare record and a clinician decides it is appropriate to record them.
    * If pronouns have been recorded they should be shared.

### 3.2 GP practice

This section contains details of the GP practice where the person is registered. This information would be sourced from PDS. This will include the GP practice identifier code. In situations where a person is not registered with a GP practice, the GP practice identifier would contain the appropriate code to indicate this. This section would also need to accommodate details for temporary GP where the patient is registered away from their usual place of residence

* ‘GP practice identifier’ does not need to be a displayed field. It is intended to be used to provide the GP practice details via lookup from national registers.
* Many people will not offer a named GP. Only the ‘GP practice details’ section would need to be completed in these situations
* A patient may be registered with more than one GP practice. Normally patients are registered with one practice, but may be treated as a temporary registration (e.g. whilst on holiday) by another practice. The registered GP practice can be obtained from the PDS. Suppliers should enable more than one GP practice to be recorded to accommodate temporary registration. Communications will go to the GP surgery that the patient is permanently registered with. However, sometimes a GP who is serving a patient on a temporary basis may also need to access the transfer of care communication. In this instance, both GP practices should be recorded.
*   If a patient is not registered with a GP practice, then the GP practice record entry should appear with the text "No known GP practice".

### 3.3 Alerts

This section allows for the sharing of alerts. It is unlikely that all alerts generated for a person would be shared as part of the core information standard as some alerts are dynamically generated in local systems, for example within decision support systems.

The alerts that are shared as part of the core information standard should be determined locally. They might, for example, include the presence of a medical implant or MRSA diagnosis, the fact that the person has a dangerous dog or that a person requires [reasonable adjustments](#).

It is important that alerts are managed and removed when they are no longer relevant – e.g. “the dangerous dog” alert if the dog is no longer present.

The alerts displayed to users viewing the core information may vary by use case and user’s role.

### 3.4 Legal information


This section identifies where there is legal or formal documentation relating to the care of the person. This includes Lasting Power of Attorney (LPA), Advance Decision to Refuse Treatment (ADRT), Mental Capacity Assessments (MCAs) and Mental Health Act (MHA) status.

The documentation may be available centrally as part of shared care records or held locally as part of the persons health and care records.

NB: Advance statement element is found in the End of life care section.
*   Systems should allow copies of legal documentation to be attached to the record where it would be necessary to see copies of the original documents.
*   **Mental capacity assessment**
    Mental capacity needs to be assessed at each moment where treatment decisions need to be made. Hence there should be provisions for more than one MCA to be recorded.
        *   Mental Capacity Act 2005 ([England and Wales](#))
        *   Adults with Incapacity Act 2000 ([Scotland](#))
        *   Mental Capacity Act 2016 (Northern Ireland).
    If there is a need to communicate the outcome of a mental capacity assessment it is important to record to which specific decision it relates.
*   Lasting power of attorney (LPA) should include details of one or more people who have been given power by the person when they had capacity to make decisions about their health and welfare should they lose capacity to make those decisions. To be valid, an LPA must have been registered with the Court of Protection. If life-sustaining treatment is being considered the LPA document must state specifically that the attorney has been given power to consent to or refuse life-sustaining treatment.
* A clinician should satisfy themselves that the Advance Decision to Refuse Treatment (ADRT) is valid and that the circumstances that they are dealing with are those envisaged when the person made the ADRT. A valid and applicable ADRT is legally binding. The record should include the location of the legal document.

### 3.5 Safeguarding

This section includes any concerns in relation to safeguarding and is applicable to children and adults. This section includes whether a child is looked after and indicates the presence of a Child Protection Plan or Unborn Child Protection Plan.

There may be situations where it is not advisable to share information in this section with the person to whom it relates, so local implementations may need to apply filters in these cases. Appropriate policies and technical solutions need to be in place for these situations.

Access must be controlled to this information as per SCCI1609: Child Protection - Information Sharing.

### 3.6 Individual requirements

This section allows for the sharing of any individual requirements the person may have, such as to support cognitive impairment or mobility issues. This may relate to special needs and would extend to include a record of *reasonable adjustments* which would be included in ‘Other individual requirements’.

Specific disabilities would be included in the ‘Problem list’ section however the requirements to support the disabilities (e.g. needs wheelchair access, needs large print etc.) would be included in this section.

The accessible information requirements information would be the most recent requirement rather than a history of requirements.

### 3.7 Professional contacts

This section includes current and historic details of health and care professionals, teams or organisations involved in the care of the person. Third sector organisations can be included.

The name of the person’s current care coordinator or key worker should be included here.

### 3.8 Personal contacts

This section includes the personal contacts (e.g. family, friends, relatives etc.). Comments should be used to share information such as if a particular contact should be called in an emergency etc.

### 3.9 Participation in research

This section should be used to flag participation in clinical trials or other research initiatives.

When a person is enrolled on a drug trial or intervention, the GP receives detailed information from the research sponsor, this section only requires the name of the trial / intervention and the identification code.

### 3.10 Referral details

This section includes a record of current and historic referrals. Referral details includes the service a person is being referred from. A service may not always be coded. If the service is known, and a code is available, it should be included otherwise the service should be described in free text.

### 3.11 Contacts with professionals

This section includes the details of the person’s contacts with services, their encounters. This information may need to be filtered to only display what is relevant for a particular use case and professional’s discipline. This includes outpatient appointments, home visits, hospital and outpatient attendances, out of hours GP visits, clinic appointments, social worker visits etc.

### 3.12 Admission details

This section includes all instances where a person is admitted to an inpatient setting and would include the relevant site code according to the Organisation Data Service (ODS) codes.

### 3.13 Discharge details

This section includes the summary details of the person’s discharge, but not the actual discharge content which is shared in the relevant sections such as problem list or procedures. This should include all instances of discharge from a healthcare setting with relevant ODS codes and readable names of the discharging wards or departments of organisations where available.

### 3.14 Future appointments

This section includes the details of any future appointments the person may have. This can include both health and care appointments for example a home visit from a domiciliary care worker.

The section includes both specialty and service. Specialty should be used where possible for secondary care appointments, but service can be used for example for social care where specialty doesn’t apply.

### 3.15 Vaccinations

This section includes all vaccinations including routine vaccinations of children in accordance with the Public Health England Green Book, as well as any vaccines outside the schedule and those administered abroad.

Information about vaccines should be shared in line with nationally agreed naming and utilisation conventions.

The vaccine manufacturer should be derived from GS1 code.

Sequence number for a vaccination which is given in several separate doses should be shared using SNOMED CT.

If applicable, when sharing Indication for vaccinations given as part of the Green Book either free text or SNOMED CT can be used. Example SNOMED CT is 171279008| Immunisation due (finding).

This section allows for retrospective vaccinations as reported by the person or their guardian or carer, including those given abroad, with a flag to indicate if this is the case.

Vaccinations performed by a third party should include a date or partial date of when the vaccine was administered as well as location (which could include other countries). The attributes of performing professional would allow the organisation that administered the vaccine to be shared, if known. In addition, the ‘Reported’ flag should be set to ‘Yes’ to indicate that the information was reported to the professional by the person.

### 3.16 Problem list

This section allows for all relevant diagnoses, symptoms, conditions, problems and issues.

This would include disabilities, including learning disabilities, and conditions such as autism where they fall into the above categories i.e. are diagnosed, seen as a problem by the person or are considered a condition or similar. Behavioural factors which are not formal diagnoses but could be seen as a problem for the person would also appear under this section.

‘Onset date’ should be included where available even if this is estimated in source systems.

When a diagnosis has not yet been made, the most granular clinical concept with the highest level of certainty should be displayed. This may be a problem, symptom, sign, or test result, and may evolve over time, as a conventional diagnosis is reached. For example, ‘dyspepsia’ may be the diagnosis when a patient first presents with indigestion, upgraded to ‘gastric ulcer’ when this is found at endoscopy, and ‘gastric cancer’ when biopsies reveal this.

Unconfirmed or excluded diagnoses should not be include in structured coded fields, but may be included in free text in the comments field. Thus, in the example above, gastric ulcer and gastric cancer may be in a list of differential diagnoses at presentation, but the symptom, dyspepsia, should be included in the diagnosis field. The differential diagnoses should only be included in free text in the comments field, and not in a coded diagnosis field until confirmed with confidence.

Co-morbidities’ should be shown as separate diagnoses. For example, dementia may be recorded as a primary diagnosis by a psycho-geriatrician, but as a co- morbidity where a patient is admitted for a hip replacement. Local implementations will need to define what will be prioritised according to each use case.

In some situations a diagnosis may need to be qualified by a number of attributes to give further detail. A generic approach to these attributes (such as grade; severity; distribution; behaviour; laterality etc.) has not yet been agreed. Until this is achieved it is recommended that these features are included as free text comments.

### 3.17 Procedures and therapies

*   All procedures undertaken should be included in the e-discharge summary, including:
    *   diagnostic as well as therapeutic procedures and therapies
    *   medical as well as psychological procedures and therapies (e.g. cognitive behaviour therapy; follow-up interventions as a result of physical health checks)
* procedures carried out on different days during the hospital stay.
* complementary or alternative procedures and therapies

*   Outcomes or results of procedures should be recorded in the ‘comments’ field, as well as a comment to clarify such as statement that information is partial or incomplete
*   The discharge summary should include the operation which was actually carried out, not the planned procedure, as this may have been changed. The detail should be taken from the record of the actual procedure (e.g. operating note) rather than the planned procedure (e.g. consent to treatment).
*   The procedure, anatomical site and laterality should be SNOMED CT coded wherever possible, with free text as an option where this is not possible.
*   There are specific elements for complications relating to the procedure and anaesthetic issues
*   The anaesthesia issues included could be, for example, “short neck, difficult to intubate” and the actual intubation grade or adverse reactions.
*   Clinical coders use discharge summaries for coding hospital episodes. All those deemed to be clinically important for future care should be listed. Thus venesection would not usually merit noting, unless undertaken as a therapeutic procedure for polycythaemia.
*   Whilst hospitals use OPCS codes for procedures, these cannot be used by GP practices, so should not be included in discharge summaries.

### 3.18 Social context

This section includes information about the social setting in which the person lives, such as their household, occupational, and lifestyle factors. Social circumstances includes the person’s social background, network and personal circumstances, e.g. housing, and should also include if the person is a carer. ‘Smoking status’ should be shared using SNOMED CT rather than yes or no.

### 3.19 Services and care

This section is a record of the services being provided (or that have previously been provided) to the person to support both health and social well-being. For example, it could include domiciliary care with help for washing and feeding. A start and end date for the services should also be provided where available so it is clear which services are currently being provided. The professional or organisation providing the service, along with contact details should be made available where possible (in the ‘Performing professional’ subsection).

### 3.20 Family history

This section includes information on conditions or illness in family relations relevant to the health or care of the person.

### 3.21 Investigation results

This section includes details of the investigation results. Systems should allow copies of reports, scans, images related to the investigation results to be shared with the record. It allows for results in either structured format (e.g. blood tests) or unstructured format (e.g. genetic test with the result as a report). One or other of these should be used for the result. Investigation results received from laboratories may be imported into this section.

### 3.22 Investigations requested

The section includes details of requested investigations as yet unfulfilled. This should include the reason and priority of the request.

Investigations that have concluded, and for which results are available, should be included in the investigation results section.

### 3.23 Examination findings

This section is a summary of key findings carried out as a result of an examination conducted by a healthcare professional.

Each record of an ‘Examination finding’ should include a named examination and associated findings, which may include both coded and narrative elements.

‘Observations’ includes a record of essential physiological measurements, e.g., heart rate, blood pressure, weight, height, temperature, pulse, respiratory rate, oxygen saturation.

For children, observations would also include weight, height/length and head circumference.

### 3.24 Pregnancy status

This is to share if someone is currently pregnant and the expected due date. This information should only be shared if someone is pregnant.

It seems unlikely that this information can be reliably imported from a single system and so, is likely, to be a calculated field. This is unique in this model and may be defined as a medical device, for which separate safety assessment and registration will be required. System manufacturers will need to consider this.

Any maternity management plans or birth plans related to the pregnancy would be shared in the section ‘Additional Supporting Plans’.

Obstetric and gynaecological history, specifically any complications, would be shared in the problem list (history) for professionals that need and are authorised to access to the information.

If a person is pregnant there should be an electronic shared maternity record and if professionals need, and are authorised to access it, they should be able to link to the more detailed record. This would be through the national record locator service.

### 3.25 Assessments

This section includes details of a person’s assessments allowing for unstructured, semistructured and structured outputs from the assessment. Some assessment outputs will be narrative and may come with their own particular sub-headings e.g. psychiatry (Presenting Problem, Personal/Family History, Mental State Examination etc.)

This section would also accommodate the results of any more structured assessment tools completed (e.g. screening tools/outcomes measures such as PHQ-9 or GAD-7). Numeric results of any assessments completed can also be included.

### 3.26 Formulation

This section includes the formulation. A formulation is an account, shared by a therapist and person, of the personal meaning and origins of a person’s difficulties. This is viewed in the context of multiple factors including relationships, social circumstances and life events and will indicate the most helpful way forward.

### 3.27 Risks

Risks are likely to fall into the categories set out in the core information standard – Risk to self, risk to others, etc. However, there is also a category for other risks.

There should be mechanisms in place to validate the information in this section and for it to be reviewed regularly and if applicable ended, however the peculiarity of risk factors in mental health needs to be taken into consideration i.e. the most important factor in risk is history so information here should not be archived or filtered without careful consideration.

### 3.28 Allergies and adverse reactions

Guidance on good practice recording of allergies and adverse reactions is provided by NICE (https://www.nice.org.uk/guidance/CG183/chapter/1-Recommendations).

A record should be provided of all allergic and adverse reactions relevant to the person. Coded information on causative agents is important to healthcare professionals to enable safe prescribing of medications.

When an individual is diagnosed with an allergy related condition (e.g. anaphylactic shock or urticarial skin rash) this will be entered in addition into the diagnosis field in the healthcare system and will need to be cross referenced into the problem list and prominently displayed there.

Where there is a diagnostic code for an allergy recorded in the system, the system should trigger an allergy entry. There is a significant risk to patient safety if allergies are not explicitly and prominently displayed.

Adverse reactions need to be treated in a similar manner.

Information about probability of recurrence may be included in the allergy comments element if this has been identified.

### 3.29 Medications and medical devices


The medications section allows for using structured dose and timing information that is machine readable to facilitate the reading and transfer of medications information between systems and providers of care, through the structured dose direction cluster. Technical guidance for implementing the structured dose and timing in Fast Healthcare Interoperable Resource (FHIR) messaging is available from NHS Digital https://developer.nhs.uk/apis/dose-syntax-implementation/.

The free text Dose directions description is the form of dosage direction typically used in UK GP Systems.

Dose direction duration can be derived from the start and end dates if no other information is available.

When sharing Dose duration direction, the following examples are provided to clarify definitions for two of the coded text items which appear similar. In both cases, these directions are not an absolute instruction. They are:

*   ‘continue medication indefinitely’ - ongoing treatment planned for example when starting daily aspirin or a statin. There will be circumstances where you would stop them such as a GI bleed.
*   ‘do not discontinue’ refers to medication where suddenly stopping could be dangerous, for example the abrupt withdrawal of long-term steroids.

The medication change cluster and medications discontinued cluster both derive from discharge standards to ensure clarity of what medications had changed or been stopped in hospital. They are retained in the core information standard as they may still be useful to professionals in understanding previous medications.

The Medical devices element is for medical devices that cannot be prescribed and do not have representation in the NHS dictionary of medicines and medical devices (dm+d). Whilst medical devices that can be prescribed in primary care are generally well represented in dm+d, there are other kinds of devices used in hospital care which may not be so this section provides for this.

### 3.30 Plan and requested actions

This is the treatment plan for the treating team or clinician and any actions requested. This plan should make clear who is expected to take responsibility for actions following an encounter, for example the person receiving care or their carer; the GP or another heath care professional. For example, follow up renal function test to be arranged by the GP within two weeks of appointment.

Shared decision-making principles should apply to the development of the plan and where the person’s opinions differ, this should be included under ‘Agreed with the person or their legitimate person representative’ which will include both the aspects of the plan the person (or their representative) agree with and the aspects they disagree with.

The section would allow for the recording of planned investigations, procedures and treatment for the person’s identified conditions and priorities.

This is not a care plan it is a plan for specific actions to be carried out as a result of an encounter.

### 3.31 About Me

This section supports sharing of information that the person thinks it is important to share with professionals. This could include information about their needs, preferences, concerns and wishes. For example, it could include that a person has a pet that would need looking after were they to go into hospital. For more detailed implementation guidance please look at the following link https://theprsb.org/wp-content/uploads/2021/06/About-Me-Implementation-Guidance-v1.4.pdf

‘About me’ should be prominently displayed in the record as it is important information about the person relevant to all care and support providers. This information may be available in multimedia formats e.g. jpeg, mp3 etc. These documents are likely to follow a variety of formats but should be transferred in their entirety.

Care will need to be taken in local implementations to differentiate between ‘About me’ and things like ‘Advance Directives’ and preferences and wishes expressed in other care plans such as end of life plans.

## 4 Care and Support Plan

*   It should be possible to restrict access to the care and support plan in most cases based on the individual’s consent preferences. However, a data controller may choose to release all or part of the record for legitimate reasons, for example when a person using services is unable to give consent.
*   It should be possible to add attachments or hyperlinks in care and support plans to provide guidance, learning materials, explanatory notes, etc. The date/time of the hyperlink/addition should be included.
*   It should be possible to add comments to the plan and to sections in the plan, for example. to identify progress towards a goal (which should have a formal mechanism associated for capturing information). It should also be possible to comment on actions undertaken or suggest changes to actions. Note that adding comments to a plan is not the same as having a dialogue with others involved in the care and support planning process. Separate functionality, e.g. secure messaging would be required for this.

**Care and Support Plan &gt; Strengths**

*   Definition: Any strengths and assets the person has (i.e. things a person is good at or enjoys doing) relating to their goals and hopes about their health and well-being For example, ‘able to participate in leisure activities’ such as a sport in order to improve health and wellbeing by losing weight.

**Care and Support Plan &gt; Needs, Concerns or Problems**

*   **Needs** are defined as health or care deficits identified by the person with their carer(s) or professionals and are the motivations/indications for healthcare activities. Examples of needs could be (e.g.) ‘to dress myself’; ‘to better understand what my various medications are for’; ‘to reduce pain in my knees’.
*   **Concerns** are gathered information to support continuity of care for a person. Concerns can include biological, psychological or social concerns. They may include things the person or carer is concerned about. For example, a person’s concern may be ‘the quality of social housing’; a professional’s concern could be ‘high blood pressure’
*   **Problems** are defined as: A condition that needs addressing and is important for every professional to know about when seeing a person. Problems may include diagnoses (e.g. COPD; diabetes), symptoms (e.g. joint pain; breathlessness), disabilities (e.g. sensory impairments; amputations), health, social and behavioural issues. Problems recorded here may link to the problem list held in a shared care record or GP system for a person using services.
*   **Goals and hopes** are defined as: The overall goals, hopes, aims or targets that the person has. Including anything that the person wants to achieve that relates to their future health and wellbeing. Each goal may include a description of why it is important to the person. Goals may also be ranked in order of importance or priority to the person. For example, ‘weight loss’; smoking cessation’; ‘reducing alcohol intake’; ‘increased sleep’. ‘Goals’ tends to be historically a more medically-used term, whereas ‘hopes’ is used more widely in social care settings.
*   It should be possible to include tables (e.g. weekly schedule), diagrams or images (e.g. to illustrate how a person has made progress towards a goal) as well as video and audio clips (i.e. as a communication tool for individuals with complex accessibility requirements).
*   It should be possible to prioritise goals, indicating the importance of each goal to the person (e.g. a scale 1 to 10).
*   Each action may also have an associated additional indicator showing how confident the person is to carry it out (e.g. a scale from 1 to 10).
*   The care and support plan should be structured in a way that supports digital information exchange, with separate sections for strengths, needs and problems which can be linked to specific goals.
*   Of particular importance is the link between needs in a care plan and related goals. Each goal must link to specific needs, as well as any actions associated with it. Goals may also have related outcomes.
*   The sections associated with goals and actions that are the focus of specific care professionals should be interoperable with the care plan that professional uses for their day to day work.

Updates to the care and support plan section may include:
*   Add, edit or archive strengths, needs, concerns or problems. If a strength/need/concern becomes more or less important, then goals may need to be changed, as will associated actions.
*   Add, edit or archive goals. When a goal is archived it should be possible to also archive the actions associated with it. If the actions are still valid it should be possible to attach them to another goal.
*   Add, edit or archive actions. Once an action has been completed (i.e. status updated to indicate it has been completed), it should be possible to archive it from the care and support plan. It should be removed from the current active view of the plan, but available to view in previous versions of the plan.
*   Recording outcomes related to goals. Once a goal has been achieved, it should be possible to archive it from the care and support plan, so that it is removed from the view of the current plan, but available to view in previous versions of the care and support plan.

**Care and Support Plan &gt; Agreed with person or legitimate representative**
*   Agreement of the plan with the person (or representative) should be recorded. If agreement cannot be obtained the reason for this should be documented.
*   Where a person has been unable to agree, due to, for example, lacking mental capacity, actions should be undertaken to maximise capacity and the plan should demonstrate how a person’s rights will be promoted. If a person is unable to consent, a mental capacity assessment should be attempted, and if there is no legal representative a best interest decision made.

**Care and Support Plan &gt; Care Funding Source**
*   In health and social care there may be different sources of funding (e.g. personal budget/personal health budgets) to meet the aims and goals of the person. The ‘Care Funding Source’ section should only detail the source of the funding so as to support easy resolution where a question about funding arises. The information should not include the details of the funding, which will be held in separate documents.

**Care and Support Plan &gt; Date this plan was last updated**
* This information should be automatically retrievable from the system.

## 5 Contingency/safety plans

* Contingency/safety plans are known by other terms depending on care setting. In mental health for example, ‘safety plans’ is a commonly understood term while medically these are more commonly known as ‘Contingency plans’. Please see section 5 for a list of alternative terms.
* Not everyone who has a care and support plan will need a contingency/safety (also known as crisis/emergency/escalation/advance/anticipatory) plan. See the Glossary (section 5) which includes alternative names for care planning concepts in the standard.
* This plan is for those people who have specific and predictable risks associated with their health and wellbeing. It describes how disruptions to the care and support plan should be addressed.
* There may be a number of different contingency/safety plans to manage different aspects of health and wellbeing, e.g. diabetes, respiratory, mental health, substance misuse, etc. The plan may cover different scenarios, e.g. mild disruption/issues, through to more severe.
* It must be possible to create a contingency/safety plan at any time when the individual and those providing care and support identify a need for such a plan.
* Contingency/safety plans must be subject to or as a result of an assessment.
* Contingency/safety plans may include end of life care planning elements. These only form part of an initial conversation and a full end of life care plan should be included separately as an end of life care document.
* The ‘Coping Strategies’ element should include details of all coping strategies used in free text. Any tools used to carry out the coping strategy should be included here.
* Coping strategies may need to be regularly updated as it may depend on the stage of recovery the person is at.

## 6 Additional supporting plans

* It must be possible to hold additional supporting plans, which may be linked to the care and support plan where the individual or care professional decides that the information should be available to others. Examples of additional supporting plans: asthma plan, mental health plan, tissue viability plan, nutrition plan, falls prevention plan, hospital or other service transfer of care plan, etc.
* The format of additional supporting plans will vary according to the type of plan. Some may be structured and coded, some may include diagrams or images.
* Additional supporting plans should be available for others to view, but will only be created, updated and ended by the service creating the plan. These may be made available on the National record Locator Service (NRL) in PDF format.
* When an additional supporting plan is updated a new version of the plan may be linked to the care and support plan, again at the discretion of the individual or care professional.
* Educational and health care plans are produced for people with neurodevelopmental conditions and apply up to the age of 25. However, they transition into adult services earlier so it is important to note that this plan may exist at the same time as a care and support plan.

### 6.1 End of life care

This section contains information that would be expected in an end of life care plan that does not appear elsewhere in the core information standard. This is not a representation of an end of life care plan as it would be expected to include this information as well as information covered elsewhere in the standard. The information included in the standard is consistent with the end of life minimum dataset and SCCI1580. However, PRSB recognises that there is work to do to develop a nationally agreed information standard for an end of life care plan.

### 6.2 Documents

This section includes details for documents and images. It includes the metadata that is required for the document or image and a link to the actual document or image. When displayed in a record, documents and images should be organised logically in date order. Local implementations will need to determine the best logical groupings for use here.

A specific cluster is included for images as these are a special case where there is a document (e.g. a KOS document) with information about the image and often produced by the machine or imaging system, and a specific set of additional information (such as event code list and format code). Note that this document is separate from the investigation report which provides the results or interpretation of the imaging. For images the performing professional will be the person performing the imaging procedure rather than the author.

## 7 PRSB support

The PRSB support service is available for any help, enquiries or issues with the using or implementing the standards. Any feedback on the standard (including proposed changes) resulting from putting the standard into practice would also be welcome.

Contact is via [support@theprsb.org](mailto:support@theprsb.org) or Tel: 02079227976

Implementation Guidance

### Acknowledgements

#### The Professional Record Standards Body

The independent Professional Record Standards Body (PRSB) was registered as a community interest company in May 2013 to oversee the further development and sustainability of professional record standards. Its stated purpose in its Articles of Association is: “to ensure that the requirements of those who provide and receive care can be fully expressed in the structure and content of health and social care records”. Establishment of the PRSB was recommended in a Department of Health Information Directorate working group report in 2012.

#### Copyright

You may use and re-use the information featured in this document (not including logos or images) free of charge in any format or medium, under the terms of the Open Government Licence. Any enquiries regarding the use and re-use of this information resource should be sent to: support@theprsb.org. Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned.

Information and content © PRSB 2019

#### Professional Record Standards Body

7 - 14 Great Dover Street,
London, SE1 4YR
www.theprsb.org

Community Interest Company No 8540834



#### Revision History

<table>
<thead>
<tr>
  <th>Version</th>
  <th>Date</th>
  <th>Summary of Changes</th>
</tr>
</thead>
<tbody>
<tr>
  <td>1.0</td>
  <td>10/07/19</td>
  <td>Publication version</td>
</tr>
<tr>
  <td>1.1</td>
  <td>31/07/19</td>
  <td>Changes following feedback</td>
</tr>
<tr>
  <td>1.2</td>
  <td>08/11/20</td>
  <td>Minor changes to wording and addition of planned review date &amp; route for user feedback, following comments from RCN as part of continued endorsement process.</td>
</tr>
</tbody>
</table>

#### Reviewers

This document was reviewed by the following people:

<table>
<thead>
<tr>
  <th>Reviewer name</th>
  <th>Title / Responsibility</th>
</tr>
</thead>
<tbody>
<tr>
  <td>PRSB Assurance Committee</td>
  <td>PRSB Assurance Committee</td>
</tr>
<tr>
  <td>Helene Feger</td>
  <td>Director of strategy, communications and engagement, PRSB</td>
</tr>
<tr>
  <td>Lorraine Foley</td>
  <td>CEO, PRSB</td>
</tr>
<tr>
  <td>Martin Orton</td>
  <td>Director of Delivery &amp; Development, PRSB</td>
</tr>
<tr>
  <td>John Farenden</td>
  <td>Senior Programme Lead, Architecture Team, NHS England</td>
</tr>
<tr>
  <td>Gareth Thomas</td>
  <td>Greater Manchester LHCR Clinical Lead, Consultant in Intensive Care Medicine and Anaesthesia<br>Group Chief Clinical Information Officer<br>Senior Responsible Officer, Integrating Care Locally Programme</td>
</tr>
</tbody>
</table>

#### Approved by

This document has been approved by the following:

<table>
<thead>
<tr>
  <th>Name</th>
  <th>Date</th>
  <th>Version</th>
</tr>
</thead>
<tbody>
<tr>
  <td>Project Board</td>
  <td>26/06/19</td>
  <td>0.8</td>
</tr>
<tr>
  <td>PRSB Assurance Committee</td>
  <td>11/07/19</td>
  <td>0.10</td>
</tr>
</tbody>
</table>

#### Glossary of Terms

<table>
  <tbody><tr>
    <th>Term / Abbreviation</th>
    <th>What it stands for</th>
  </tr>
  <tr>
    <td>A&amp;E</td>
    <td>Accident and Emergency</td>
  </tr>
  <tr>
    <td>AoMRC</td>
    <td>Academy of Medical Royal Colleges</td>
  </tr>
  <tr>
    <td>CCG</td>
    <td>Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>CCIO</td>
    <td>Chief Clinical Information Officer</td>
  </tr>
  <tr>
    <td>CDGRS</td>
    <td>Clinical documentation and generic record standards</td>
  </tr>
  <tr>
    <td>CIO</td>
    <td>Chief Information Officer</td>
  </tr>
  <tr>
    <td>CPAG</td>
    <td>Clinical and Professional Advisory Group</td>
  </tr>
  <tr>
    <td>CRO</td>
    <td>Clinical Responsible Officer</td>
  </tr>
  <tr>
    <td>CSP</td>
    <td>Care and support plan. Used interchangeably with DCSP</td>
  </tr>
  <tr>
    <td>DCB</td>
    <td>Data Coordination Board</td>
  </tr>
  <tr>
    <td>DCSP</td>
    <td>Digital care and support plan. Used interchangeably with CSP</td>
  </tr>
  <tr>
    <td>EHR</td>
    <td>Electronic Health Record</td>
  </tr>
  <tr>
    <td>EPR</td>
    <td>Electronic Patient Record</td>
  </tr>
  <tr>
    <td>ETTF</td>
    <td>Estates and Technology Transformation Fund</td>
  </tr>
  <tr>
    <td>FHIR</td>
    <td>Fast Healthcare Interoperability Resources</td>
  </tr>
  <tr>
    <td>GP</td>
    <td>General Practitioner</td>
  </tr>
  <tr>
    <td>GPSoC</td>
    <td>GP System of Choice</td>
  </tr>
  <tr>
    <td>HCPG</td>
    <td>Health and Care Professionals Group</td>
  </tr>
  <tr>
    <td>HIG</td>
    <td>RCGP Health Informatics Group</td>
  </tr>
  <tr>
    <td>HIU</td>
    <td>Health Informatics Unit (Royal College of Physicians)</td>
  </tr>
  <tr>
    <td>HL7</td>
    <td>Health Level 7</td>
  </tr>
  <tr>
    <td>HLP</td>
    <td>Healthy London Partnership</td>
  </tr>
  <tr>
    <td>HSSF</td>
    <td>Health and Systems Support Framework</td>
  </tr>
  <tr>
    <td>ICR</td>
    <td>Integrated care record. Used interchangeably with IDCR</td>
  </tr>
  <tr>
    <td>IDCR</td>
    <td>Integrated digital care record. Used interchangeably with ICR</td>
  </tr>
  <tr>
    <td>LDR</td>
    <td>Local Digital Roadmap</td>
  </tr>
  <tr>
    <td>LHCR</td>
    <td>Local Health and Care Record</td>
  </tr>
  <tr>
    <td>Metadata</td>
    <td>A set of data that describes and gives information about other data</td>
  </tr>
  <tr>
    <td>NIB</td>
    <td>National Information Board</td>
  </tr>
  <tr>
    <td>NHS</td>
    <td>National Health Service</td>
  </tr>
  <tr>
    <td>NHSCC</td>
    <td>NHS Clinical Commissioners</td>
  </tr>
  <tr>
    <td>NHSD</td>
    <td>NHS Digital</td>
  </tr>
  <tr>
    <td>NWL</td>
    <td>North West London</td>
  </tr>
  <tr>
    <td>NWL CCGs</td>
    <td>North West London Collaboration of Clinical Commissioning Groups</td>
  </tr>
  <tr>
    <td>PID</td>
    <td>Project Initiation Document</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Professional Record Standards Body</td>
  </tr>
  <tr>
    <td>R CGP</td>
    <td>Royal College of General Practitioners</td>
  </tr>
  <tr>
    <td>RCN</td>
    <td>Royal College of Nursing</td>
  </tr>
  <tr>
    <td>RCOT</td>
    <td>Royal College of Occupational Therapists</td>
  </tr>
  <tr>
    <td>RCP</td>
    <td>Royal College of Physicians</td>
  </tr>
  <tr>
    <td>SCR</td>
    <td>Summary Care Record</td>
  </tr>
  <tr>
    <td>SNOMED-CT</td>
    <td>Systematized Nomenclature of Medicine - Clinical Terms</td>
  </tr>
  <tr>
    <td>SOCITM</td>
    <td>The Society for Information Technology Management</td>
  </tr>
  <tr>
    <td>STP</td>
    <td>Sustainability and Transformation Plan</td>
  </tr>
  <tr>
    <td>ToC</td>
    <td>Transfer of Care</td>
  </tr>
  <tr>
    <td>WSIC</td>
    <td>Whole Systems Integrated Care</td>
  </tr>
</tbody></table>

**Planned Review Date and Route for User Feedback**

The next maintenance review of this document is currently being planned and commissioned, but is likely to be in March 2021. This is subject to agreement with NHS Digital as the commissioning body. Please direct any comments or enquiries related to the project report and implementation of the standard to support@theprsb.org

### 1 Executive Summary

People want to see the benefits that digital information sharing can bring embraced by health and social care, just as they’ve seen them in other parts of their lives.

The NHS and social care are poised to transform care for each of us from birth to the end of life, and using information and technology better is central to these changes. Deciding what information should be shared between the NHS, social care and people who use services and how it can be shared safely is fundamental.

The PRSB was commissioned by NHS England to define the information that should be shared, called a ‘core information standard’, by consulting widely with people who use services, health and care professionals. As a UK-wide body, PRSB consulted on the standard across the four nations, because people’s health and care is provided across geographical boundaries and the information needed to provide safe, high quality care should follow the person.

The standard defines a set of information that may be shared between systems in different sites and settings, and with professionals and people using services. What information is accessed will differ depending on who is accessing it, for what reason and the wishes of the person the information is about. Its use will be decided locally; the Local Health and Care Record (LHCR) localities, under NHS England’s LHCR programme, will set plans to adopt it early. After that, the standard will be rolled out nationally and can be used across the UK.

The project was carried out in two phases: the first phase reviewed evidence from existing standards and shared care records in order to produce a draft core information standard. The second phase of work developed the standard in key areas where it was seen that further work was needed (e.g. mental health and social care). The PRSB carried out broad and deep consultation and engagement across health and social care using online workshops, a national deliberative workshop, social media (to obtain more diverse input from the public), expert reviews, an online workshop for vendors and an online survey. This allowed the content of the information standard to be refined and started to build awareness and support among all the key groups with an interest in information sharing in health and care. The core information standard (Appendix B) is being formally endorsed by royal colleges and professional bodies and incorporated locally by vendors and LHCRs in their systems; at a national level incentives will also encourage wider adoption.

Defining a core information standard for use in shared care records is complex, important and challenging work, not only because of the scale of the information it contains but also because of the effects it might have when used. Though there was strong support for the benefits that sharing a wide range of care information would bring, there were also a wide range of views and concerns raised by professionals and users of services alike. The report details the issues raised during the consultation and makes recommendations which should form essential reading for any organisations creating shared care records. These include: implementation and usability, information governance and safeguarding, ownership and control of data, data quality and accuracy, professional best practice and training, the effect on person-centred care, and addressing potential barriers to sharing information between health and social care.

The findings are as follows:


* There is strong support for shared care records which are seen as improving accessibility, transparency and the relationship between professionals and users of services; people believe they will drive up the quality and safety of care and support self-management. But there is also confusion about how shared care information will work in practice; people who use services doubted they would be able to influence and control use of their data and professionals were concerned about information overload and usability. Some professionals also expressed concern about having access to less information through the loss of valuable existing systems as they are replaced by local shared care records.

* Many people told us that using the core information standard will be challenging given the huge variation in the uses for the information it contains. They said that this should not be treated as just a technical exercise but needs to address how people want to use the information in the future. Designing systems with users so that information is usable, accessible and relevant is vital, people told us. Concerns were raised about data quality and keeping timely and accurate information in such a complex, information-rich world. People said there is a need to be clear about what is good professional practice in recording information, for example diagnoses and problems, and they should make sure that the meaning of data isn’t lost or changed when information is extracted from clinical records and shared. Training was said to be essential so that every system user is familiar with how to store, access, retrieve and use the data.

* Everyone strongly supported a person-centred approach to care and agreed that the ‘About Me’ information is critical to good care. People believe that better information sharing using the standard and shared care records could lead to a major change in the way professionals and people using services work together. However, there were also concerns raised about ownership and control of the information in care records. People said the ‘About me’ section lets them contribute important information about themselves. They also said they wanted to be able to comment on or edit information in their record and they wanted to be sure that the information they enter is acted on to improve their quality of life and their own ability to care for themselves. People said that data from mobile devices like Fitbits and mobile apps should be shared as it will also play an important part in people looking after themselves better and watching for signs of illness. Professionals questioned who would check and act on this data and they raised safety concerns should data be missed and not acted on; they also questioned how they would know whether the data is correct.

* People told us they want to be sure that their health and social care information will be held safely, that they will be asked to consent to sharing their information and that it will only be viewed when it is necessary for care. They want to know that audits will be in place to check who has viewed their information and any breaches will be reported to them promptly.

* People said that social care information involves a wide range of professionals and settings and that the culture and language differ from healthcare, which can create barriers to sharing. For example, social care is moving away from using computer-readable information towards more descriptive information about the person, whereas healthcare is moving toward using more computer-readable information. This will make sharing more complex and possibly difficult.

* People said it was helpful that the core information standard draws on existing standards and system suppliers have already used many of its parts. However, people also said areas were missing from the core information standard that should be looked into further investigation, for example community, dental, optometry, screening, self-reported data and genetic data.

The PRSB has made the following important recommendations in six key areas as follows:

* A strong narrative that tells professionals and the public about the important gains to be made from sharing care information is needed. This should support a unified national programme of consultation and engagement to build understanding and win trust in how shared care records will be used in future. This is key if clinical, professional and public engagement in shared care records is to deliver benefits.
* Use of the core information standard needs national and local actions and must involve the professionals using the information, people who use services and system suppliers. At a national level, this could include using levers and incentives such as issuing an Information Standards Notice (ISN) or working with regulators to include the standard in their regulation of health and care. At a local level, each LHCR localities should work with vendors to test different uses of the core information standard to address any barriers to its use. The right professionals should be involved in the testing to ensure that systems provide the information they need in a way that is most useful. Where technical standards are needed to support sharing information, clinicians and professionals should be involved to make sure that they work for the user and are consistent with the PRSB information model. Further work should be commissioned to clearly describe good clinical practice in recording diagnoses and problems.
* More work is needed to understand what further information, not currently included in the core information standard, people want to share with professionals, for example health data from mobile devices, and how it could be used to improve health and care. Further work is also needed to better understand the benefits and effects of people accessing and contributing far more information to their health and care records, including more work on the ‘About me’ section, as information is more widely shared. The policy, strategy and safety issues that might arise from this should be addressed nationally so that local differences can be avoided. This should include work with NHS England’s Personalised Care team and a LHCR to pilot use of a personal health record and measure its impact on users and professionals in line with local uses based on real-life scenarios.
* The core information standard should be reviewed in relation to the NHS England’s Information Governance Framework, once complete. A narrative is needed that describes how the Information Governance Framework will work in a way that can be understood by professionals and the public. The framework should be tested in practice by the LHCRs, along with the core information standard, so that we can identify and resolve any barriers and prove that it works.

*   A clear plan should be developed that sets out further engagement and consultation with social care professionals and service users across adult and children’s social services and care providers to make sure that the shared information that is needed by social care professionals form part of the core information standard. This should build on existing links with the Local Government Association, NHS Digital Social Care programme and The Society for Information Technology Management (SOCITM).

*   Work should be commissioned to develop the core information standard further in areas where there are gaps. Also, a UK-wide metadata standard (a standard about data itself) for documents and images should be agreed and applied to the core information standard. PRSB should review existing standards and align these to the new core information standard.

The core information standard that we have defined here is a reference framework for driving integrated care. Its development was prompted by the Local Health and Care Record programme but it is a major asset for digital information sharing generally. The core information standard is the product of collective efforts of clinicians, professionals, vendors and people who use services. The proof of its usefulness and usability will come through trialling it in practice, refining it and overcoming barriers so it can be adopted widely for the benefit of professionals and the people they serve.

#### 2.1 Introduction

The changes planned in health and social care over the next decade – from reducing premature births to helping people live healthier, longer and more independent lives – are all underpinned by better use of information and technology to improve care.

In order to realise these benefits, we need to agree what information should be shared and deploy systems that will talk to one another across health and social care, with the right safeguards in place.

There are currently in excess of sixty local shared care records in operation across the country. NHS England has established a programme, the Local Health and Care Records (LHCR) programme, to expand the coverage of local shared care records to cover larger populations. This will make important information available to health and care professionals and people using services across wider geographic areas, covering populations of three to five million, to improve the quality of care and care co-ordination.

The information will be brought together for individuals across the health and care settings in selected geographic areas, known as localities, to support integrated pathways of care, in the form of shared care records. The records will be accessible to people who use services, and authorised professionals and carers who need to see the record to provide care. They will not include all information about the person and will not remove the professional responsibility to verify the information with the person.

Although the primary focus of shared care records is to support direct care, a secondary objective is to be able to utilise de-personalised information in support of population health analysis and research. Collecting data covering populations of three to five million will enable signification analytic and research opportunities. Despite the shared care records covering large geographic and population sizes, movement of patients and citizens across boundaries will still take place and information will need to be shared across boundaries to support their care. Sharing information between organisations and across geographic boundaries requires that the information can be captured and shared in a standardised way and that the meaning and context of the information is maintained as it is shared. Sharing the information in a standardised way requires the development and use of information and technical standards.

NHS England set out initial expectations for the type of information that should be part of a core set of information (Appendix A datasets) and commissioned the Professional Record Standards Body (PRSB) to test this and seek consensus on what information should be shared. The PRSB is working with citizens and health and care professionals to define this in an initial ‘core information standard’.

It is imperative that the core information standard has local buy-in and based on local needs, but with national consensus. To achieve local ownership and national consensus, a rigorous consultation approach involving national multi-disciplinary engagement and local engagement through local networks was key.

This work has resulted in a national core information standard to support shared care records based on the initial agreed scope, namely that of direct, individual care. It is now expected that the technical specifications will be developed and localities will be expected to establish a plan to migrate towards the agreed standard.

#### 2.2 The Core Information Standard
##### How much information should be shared?

In the future, digital advances mean that most, if not all, information related to a person's health and care can be shared with care professionals and citizens themselves. This is subject to being able to demonstrate that there is a legal, justifiable need to share for the benefit of the individual.

We are some way from this goal today so we need to start with a modest set of core information that is a realistic and achievable goal for most health and care systems over the next few years. The core information standard will include important information from a range of sources including primary, secondary and specialist care as well as social care and information contributed by individuals themselves.

In consultation with professionals and citizens on what a standardised set of core information should include, it is clear that achieving wide scale adoption over time of even a modest set of information that can be shared between information systems would deliver profound improvements in the quality, safety and efficiency of care.

##### The core information standard

<p>///mermaid
graph TD
    subgraph Sharing
        P["fa:fa-user-circle Person: About me, preferences"] --&gt; Core
        MH["fa:fa-leaf Mental health/community: Meds, assessments, care plans, admissions, discharges"] --&gt; Core
        H["fa:fa-hospital-alt Hospital: Meds, allergies, admissions, discharges, assessments, procedures"] --&gt; Core
        LGS["fa:fa-home Local government social services: Assessments, care packages, social context"] --&gt; Core
        CP_S["fa:fa-hand-holding-heart Care providers: Care plans"] --&gt; Core
        GP_S["fa:fa-stethoscope GPs: Meds, problems, allergies, care plans, investigations/requests and results"] --&gt; Core
        NS["fa:fa-globe National systems: PDS, NRLS"] --&gt; Core
    end

    subgraph Core Information
        Core[fa:fa-database CORE INFORMATION FOR A PERSON]
    end

    subgraph Viewing
        Core --&gt; PC["fa:fa-user-circle Person/carer: Full information"]
        Core --&gt; SHP["fa:fa-user-md Specialist healthcare professionals: About me, preferences, care plans, medications, allergies, care provision"]
        Core --&gt; UE["fa:fa-ambulance Urgent and emergency care: Demographics, medications, allergies, problems, About me, preferences, care provision"]
        Core --&gt; SCP["fa:fa-handshake Social care professionals: About me, preferences, problems, admissions, discharges"]
        Core --&gt; CP_V["fa:fa-hand-holding-heart Care providers: About me, preferences, medications, discharges"]
        Core --&gt; GP_V["fa:fa-stethoscope GPs: About me, preferences, care provision, assessments, care plans, discharges, medications"]
    end
	</p>

The diagram above shows examples of information that may be sourced from different settings and the different views of the information that may be required for different professionals in different roles.

The core information standard defines a set of information that can **potentially** be shared between systems in different sites and settings, among professionals and people using services. Which components of core information are accessed and used will be different depending on:

*   Who you are, e.g. an A&amp;E consultant, a GP, a physiotherapist, a person accessing their own records.
*   The situation, e.g. a crisis or emergency situation, being discharged from hospital to a care home, managing a long-term condition.
*   The wishes of the person the information concerns regarding who should have access to their information, e.g. an individual may object to their information being shared.

How these different views of information are physically presented in systems will be dependent on system vendors and local implementers. It should ensure that the required information is presented in a way that is useful and usable and supports professionals to do their work efficiently and safely and citizens to access the information they need to manage their own care.

The core information standard will provide a framework which local health and care systems can reference and move towards over time, according to their local priorities and capability to innovate and change at a speed that makes sense for them, and recognising the maturity of local source systems and their ability to interoperate. The core information is a baseline, and it is expected to evolve and grow as we learn from its practical application and use.

#### 2.3 Project governance

The national LHCR Programme has a specific work stream dealing with health and care professional engagement.

That work stream, overseen by the LHCR Health and Care Professional Group (HCPG) was originally chaired by the NHS England National Medical Director. At the time of writing this is transitioning to Dr Simon Eccles, the NHS Chief Clinical Information Officer. The work stream has established several projects including this one to define the core information standard. This project was commissioned by NHS England on behalf of the HCPG.

This project was led on behalf of the LHCR HCPG by the Greater Manchester LHCR clinical lead, Dr Gareth Thomas, who is also the Senior Responsible Owner of the national interoperability programme.

The core information standard had its own project board. Throughout the course of the project, John Farenden, NHS England, represented the project at the national LHCR programme board.

#### 3.1 Overall approach

The project was conducted according to the PRSB process and assurance criteria.

<p>///mermaid
graph TD
    %% Define the steps and assign corresponding Font Awesome Icons
    
    %% Row 1 - Draft and Survey Phase
    subgraph Row 1
        Brief["fa:fa-file-alt Brief"]
        PID["fa:fa-file-alt PID Comms plan"]
        Evidence["fa:fa-chart-bar Evidence gathering"]
        Draft1["fa:fa-file-invoice 1st DRAFT"]
        Workshop["fa:fa-users Workshop"]
        Draft2["fa:fa-file-invoice 2nd DRAFT"]
        Survey["fa:fa-tablet Online survey"]
    end
    
    %% Row 2 - Review and Finalization Phase
    subgraph Row 2
        Draft3["fa:fa-file-invoice 3rd DRAFT"]
        Expert["fa:fa-comments Expert group"]
        FinalDraft["fa:fa-file-invoice FINAL DRAFT"]
        Endorsement["fa:fa-certificate Endorsement"]
        Safety["fa:fa-exclamation-triangle Safety Case Lessons Learned"]
        Publication["fa:fa-book-open Publication"]
        Standard["fa:fa-file-contract NEW PRSB STANDARD"]
    end
    
    %% Legend and Reviewer Nodes
    AC[AC — Assurance Committee]
    PB[PB — Project Board]

    %% Define Flow and Connections
    
    %% Row 1 Flow
    Brief --&gt; PID
    PID --&gt; Evidence
    Evidence --&gt; Draft1
    Draft1 --&gt; Workshop
    Workshop --&gt; Draft2
    Draft2 --&gt; Survey
    
    %% Reviewer Connections in Row 1
    AC1(AC)
    Brief -.- AC1
    AC1 -.- PID
    
    PB1(PB)
    PID -.- PB1
    
    PB2(PB)
    Draft2 -.- PB2
    
    %% Connection between Rows
    Survey --&gt; Draft3
    
    %% Row 2 Flow
    Draft3 --&gt; Expert
    Expert --&gt; FinalDraft
    
    FinalDraft --&gt; Endorsement
    Endorsement --&gt; Publication
    
    FinalDraft --&gt; Safety
    Safety --&gt; Publication
    
    Publication --&gt; Standard
    
    %% Reviewer Connections in Row 2
    AC2(AC)
    FinalDraft -.- AC2
    
    PB3(PB)
    FinalDraft -.- PB3
	</p>

A flowchart showing the process of developing a new PRSB standard.&lt;/img&gt;

The approach was undertaken in two phases:

*   a **discovery phase (September 2018 – January 2019)** to identify the information requirements for sharing and where information standards already exist to support this.
*   **phase 2 (January 2019 – May 2019)** to develop the information standards in key areas identified during the discovery phase as requiring further work, e.g. mental health and social care. We also mobilised multi-disciplinary consultation and engagement to further refine the content of the information standard build awareness and support across all key stakeholder groups. This has resulted in a core information standard (Appendix B) for which formal endorsement will be sought from the royal colleges and professional bodies. This product will enable technical specifications to be developed and LHCR localities to move forward on their plans for aligning with the standard. It will also provide a basis for aligning system levers and incentives to encourage the adoption of the standard (for example by inclusion in the Health and Systems Support Framework (HSSF)). The scope of the core information standard is for direct / individual care. The content of the standard is expected to evolve over time as it is trialled and put into practice and new requirements are identified.

#### 3.2 Discovery Phase

The objectives of the discovery phase were to:

*   obtain agreement on the use cases for sharing information between LHCR localities (this was restricted to the first wave of agreed localities – five areas)
*   jointly, with the first wave LHCR localities, define and obtain consensus on a definition of a draft core information standard; a minimum set of information needed to ensure care co-ordination and the continuity of care based on a set of use cases
*   develop and agree recommendations for future phases of work to fill the gaps in the core information standard and to potentially extend the core.

The draft core information standard was developed by mapping NHS England’s definition of the core information set (Appendix A), the Greater Manchester core dataset (Appendix C¹) and the PRSB Standards for the Structure and Content of Health and Care Records (Appendix C²) (PRSB standards) against the national and international standards and records (Appendix C³-¹⁰).

The starting point for the core information standard was the existing section or sections from the PRSB standards that corresponded to the information requirements identified from the mapping. This was because the elements within each section have already been extensively consulted on as part of the PRSB standards development process and some also have corresponding technical messaging standards to enable interoperable sharing of the information. Where there was no corresponding section from the PRSB standards the identified as requiring further work.

Representatives from the LHCR localities and experts/clinical leads were consulted to validate assumptions about the information components that should be part of the core information standard leading to strong consensus on seven key topic areas for further work (a list of the consultees can be found in Appendix D).

The following areas were proposed for further work as part of the LHCR programme:

*   Input from people who use services and their carers
*   Social care, including both sharing with local authorities and care providers.
*   Parts of the maternity and healthy child records that should form part of the core information standard
*   Requirements to share encounters, alerts, test orders and future appointments
*   Requirements to share mental health information
*   Confirmation that requirements for end of life care is supported
*   Confirmation that the requirement to link to a genetic report is supported

#### 3.3 Phase 2

The objectives of Phase 2 were:

*   To test and validate the definition of the core information standard and the principles which should guide its use.
*   To strengthen the core information standard content by undertaking sufficient research, analysis and consultation with experts in the areas identified as requiring further work to enable full and meaningful multi-disciplinary and citizen consultation on the full standard.
*   To consult and engage on the full standard and its use with the LHCR localities and a broad multi-disciplinary range of professional and other stakeholders, patients/public and their advocates.

o Test the first draft of the standard and the information to be included with consultees and capture any suggested changes, additions or improvements

o Capture any implications, considerations or concerns regarding how the core information standard could affect how care is provided or received from the perspective of:

    ▪ People (citizens, patients, carers)

    ▪ Health and social care professionals

o Help consultees to think about how care could be delivered and not be limited by current models of care provision

- To update PRSB information models to accommodate the standard; and to develop associated non-technical implementation guidance to support adoption.

- To develop a clinical safety report and associated hazard log.

- To gain endorsement from relevant professional bodies for the core information standard.

- To raise awareness and build understanding of what the core information standard is and how it could be used and build support for the proposed changes.

A project team was established which included professional and patient advisors (see Appendix E).

The core information standard was enhanced through research and development of those areas identified in the discovery phase as requiring further analysis. Comprehensive consultation with all stakeholders was then undertaken to develop this current release of the standard. The consultation approach is described in more detail in the following sections.

#### 4.1 Objectives

The objectives of the consultation were as follows:

- Raise awareness and build understanding of what the core information standard is and how it will be used.
- Consult with subject experts and others to develop the immature areas of the draft standard to produce a more rounded version.
- Consult widely and test the draft standard with a broad range of multi-disciplinary professionals and citizens and incorporate their feedback.
- Capture any implications, considerations or concerns regarding how the core information standard could affect how care is provided or received from the perspective of:

    o People (citizens, patients, carers)

o Health and care professionals

- Help consultees to think about how care could be delivered and not be limited by current models of care provision.

- Produce a version of the standard that is fit for purpose and has broad buy-in and support from the professions and people that will use it.

#### 4.2 Scope of consultation

Included in scope:

- Development of the core information standard including the less developed areas and gaps identified in the initial phase of work.
- Consultation on the complete content of the standard and any implications, considerations and concerns relating to its use.
- Organisations and individuals representing people who will use the standard.
- Representatives of all the disciplines of health and care who may use or contribute to the information shared using the standard.

Exclusions from scope:

- The consultation excluded any detailed consideration use of the standard for sharing information for population health management and research purposes other than having prepared answers for the questions likely to arise in consultation regarding wider use of the data.
- The consultation excluded considerations of the information governance and data sharing considerations relating to the core information standard other than having prepared answers for the questions likely to arise.

#### 4.3 Key themes of the consultation

The consultation addressed the following key themes and risks that had arisen during the discovery phase.

- There was considerable confusion about what the core information standard is and how it would be used even amongst informed groups. In conjunction with NHS England, PRSB defined the core information standard with a set of frequently asked questions for use during the consultation process and tested that this was understood.
- The ambition is that in future, people will take far more responsibility for their own care, and this will require confidence and competence in accessing their own records. Significant weight was given to what people want to see in the information standard and input from people and their advocates must be given high priority in the consultation. In particular, the consultation prioritised representation of those who are likely to be the heaviest users of the information, e.g. those with long term conditions.
- The consultation was very broad and wide ranging and the uses of the core information standard far more complex and varied than more typical PRSB standards consultations. The single workshop provided insight but the limitations should be appreciated. An ongoing campaign of engagement and consultation is likely to be required over a period of years.

*   The core information standard is a national standard and not just for the LHCR localities. Consultation participants were drawn from across PRSB membership as well as representatives from the LHCR localities.
*   A discussion about the technical implementation of the standard risked monopolising the debate rather than focusing on the content. Statements were drawn up to differentiate between the core information standard content and how it should be implemented locally.
*   There is high sensitivity regarding how personal data will be used for purposes other than direct care and also what information will be shared with which professionals. There was a risk that this could skew responses to consultation if not proactively addressed. A narrative was developed with NHS England to clarify how data will be used for purposes wider than direct care and how information governance policies will be developed and implemented to provide reassurance regarding its use.
*   During the discovery phase clinical engagement with the LHCR localities was limited. Agreeing the vision and the core information standard is a critical part of local engagement and buy-in and vital to successful implementation. LHCR clinical leads and other team members were invited to all consultation events and localities were encouraged to use a tailored version of the national materials to undertake comprehensive local engagement supported by the PRSB team. However, this offer was not taken up. The PRSB therefore took the opportunity to engage with the local teams where possible, for example we were closely with the OneLondon LHCR locality on the information modelling and with LHCR systems suppliers who provided valuable input.
*   Vendor compliance with the standard will be key to its successful uptake. This version of the standard will be incorporated in the HSSF when the technical specifications have been developed. The national workshop had limited places and prioritised professionals and service users. Tech UK was included in the workshop but an additional supplier webinar was organised to start engagement with suppliers. On-going engagement with suppliers will be key.
*   The programme has established parallel work streams to engage councils in the wider LHCR programme. This includes establishment, by the Local Government Association, of a local authority network and engagement programme. The Society for Information Technology Management (SOCITM) engaged with local authorities and we worked with SOCITM to gather input from councils to help inform the core information standard.

#### 4.4 Participant framework

The stakeholders identified for this project are set out in Appendix F. This was used to develop the participant framework which sets out the individuals who represent these stakeholders and their involvement in the consultation. This spreadsheet is not ordinarily distributed because it contains personal information, but the analysis enables the project to answer specific questions on who from each stakeholder organisation participated in each consultation event.

#### 4.5 Consultation methods and approaches

The following methods were adopted:

**Consultation on areas requiring further development and analysis**

*   Evidence review, research and analysis of topic areas of the information standard identified as needing further work.
*   Interviews with subject matter experts.
*   Citizen focus group for people who use services and their carers.
*   Webinars to draw together findings and build consensus with the topic specialists and a general audience.
*   Social care topic included consultation with local authorities via SOCITM and engagement with the Care Provider Support Service network.

The particular themes and consultation questions tested in the focus group and webinars can be found in Appendix G.

The webinars held were as follows:

<table>
<thead>
<tr>
<th>Topic</th>
<th>Date</th>
<th>Invitees</th>
</tr>
</thead>
<tbody>
<tr>
<td>People using services and their carers</td>
<td>27/02/19</td>
<td>People who use services and their carers, clinicians and professionals</td>
</tr>
<tr>
<td>Social care</td>
<td>26/02/19</td>
<td>Social workers, carers, patients, health visitors and care home professionals.</td>
</tr>
<tr>
<td>Encounters, alerts, appointments and test orders</td>
<td>20/02/19</td>
<td>Technical architects, informaticians, clinicians and people who use services</td>
</tr>
<tr>
<td>Maternity and healthy child</td>
<td>26/02/19</td>
<td>Pregnant women, parents, midwives, obstetricians, gynaecologists, surgeons, paediatricians, paediatric nurses, genomics experts, social workers, health visitors, dieticians, dentists and other professionals from across health and social care.</td>
</tr>
<tr>
<td>End of life</td>
<td>19/02/19</td>
<td>Clinicians, palliative care nurses, carers, hospice professionals and other end of life care specialists</td>
</tr>
<tr>
<td>Mental health</td>
<td>26/02/19</td>
<td>Mental health professionals, carers and patients.</td>
</tr>
</tbody>
</table>

Webinar recordings are available here.

Lists of attendees for these events can be found at Appendix H.

**National consultation workshop**

The output of the work on the topic areas identified above was consolidated within a next iteration of the core information standard and reviewed with professional and patient project leads leading to a version for consultation at the workshop.

A national all-day workshop was held to test the draft standard and to address the consultation objectives and consider the content of the standard, implementation considerations and risks.

The workshop included 70 participants with representation from the LHCR localities and a cross-section of clinical disciplines, social care, patients, carers and service user representative groups who valued the discussion, and different perspectives shared.

Feedback from the workshop was extremely positive with most rating it 4/5 or 5/5.

<blockquote>
"It was really good to hear the different perspectives and the tables were well balanced. Case studies were challenging and represented real world complexity."
</blockquote>

Output from the workshop was discussed with the project advisors and the models updated informed by their review. This model was also shared with the NHS Digital terminology team to identify any SNOMED CT messaging requirements and reference subsets Discussion have been held with the terminologists and the value sets updated.

The particular themes and consultation questions tested in the focus group and webinars can be found in Appendix I.

A list of attendees can be found in Appendix J.

**Online survey consultation**

Building on the findings from the consultation webinars and workshops and the consultation objectives and themes, a survey was designed using Survey Monkey to reach the widest possible number of frontline professionals and patients, carers and service users or their representatives.

The survey and accompanying consultation document were hosted on the Professional Record Standards Body (PRSB) website and the Clinical and Professional Advisory Group (CPAG), and promoted via the Royal College of Physicians, PRSB and partner organisations’ social media channels.

The survey was sent to 1325 individuals, including PRSB advisory board representatives, patient and carer groups, royal colleges, specialist societies and other professional bodies in health and social care to distribute across their networks. Additionally, it was distributed to PRSB’s 708 newsletter subscribers, the 413 stakeholders who we identified as possible attendees for the webinars and workshops, and past workshop attendees. The survey was featured in a number of publications such as the NHS Improvement provider bulletin, Digital Health Intelligence, NHS England CCG bulletin, NHSE Informed and NHSE Intouch, on professional platforms such as Ryver and with groups such as the Pharmacy Digital Forum and Scottish Children’s Cancer and Leukaemia Group members.

The survey was also publicised through the chief social and adult and children’s social care directors, the care provider alliance representing up to 2 million working in domiciliary care and care homes, system suppliers, LHCR teams and patient groups such as the Wellcome Trust, Understanding Patient Data, National Voices (representing 140 charities) and the Patient Information Forum (representing 300+ charities).

The survey ran from 1 April 2019 to 1 May 2019, with 1010 individuals participating. The survey responses were collated and analysed (both quantitatively and qualitatively) and have been used to inform the recommendations for this report. The survey report can be found [here](#).

The survey design can be found at Appendix K.

**Requirements Log**

A requirements log was maintained to capture requirements identified from sources outside of the main consultation process (e.g. email). This, together with the webinar and workshop outputs were analysed to synthesise themes which emerged from consultation and identify new requirements.

**Expert reviews**

Following the consultation, the core information standard was reviewed by an expert group of informaticians and project advisors with a particular focus on resolving outstanding issues with the information model. There were two expert group review meetings, on 1 and 16 May 2019. Expert group participants are listed in Appendix L. The questions asked at the expert group meetings are included in Appendix M. Outputs from these meetings were fed directly into the information model and into the implementation guidance where necessary.

**Supplier Webinar**

Suppliers listed on the Health and Systems Support Framework were invited to a webinar on 8 May 2019 to discuss the core information standard and provide their views on the design, in particular in the context of any existing health and social care products which they offered, and future interoperability. The consultation questions are set out in Appendix N.

Outputs from this webinar have been used to inform the recommendations in this report.

Attendees at the supplier workshop can be found in Appendix O.

### 5 Core Information Standard - information model

The information model is included in Appendix B and can also be found [here](#).

### 6 Implementation guidance

The implementation guidance was developed through the consultation process and expert group discussions to provide additional information to use of the standard in practice.

PRSB standards include implementation guidance intended for the following audiences:

1. Technical messaging specification developers
2. System suppliers incorporating the standards into systems and implementation teams at provider organisations
3. Users of standards in their roles as health and care professionals, patients, carers and citizens

The implementation guidance can be found [here](#).

### 7 Clinical safety case and hazard log

The PRSB is producing a clinical safety case and hazard log. The approach follows the standard approach to clinical safety for the NHS and complies with DCB 0129 (for IT suppliers). Further information can be found at https://digital.nhs.uk/services/solution-assurance/the-clinical-safety-team/clinical-risk-management-standards

The approach that will be taken is:

1. Identify risks and hazards from the consultation outputs:
    * Hazard workshop
    * Workshop and webinar outputs
    * Clinical and other expert reviewer meetings
    * Survey consultation findings
    * Review hazards from other relevant PRSB standards

2. Develop hazard log

3. Develop clinical safety case from hazard log

4. Assure and approve hazards log and clinical safety case
    * Seek NHS Digital clinical safety team approval
    * Seek PRSB Assurance Committee approval
    * Clinical safety officer hands over clinical safety care to PRSB clinical director (owner)

5. Hand over ownership of clinical safety case and residual risks to NHS Digital.

The core information standard clinical safety case will be published shortly.

### 8 Endorsement

Formal endorsement, of the standard will be sought from a wide range of organisations. Not all organisations are able to formally endorse and where the support of an organisation is deemed essential, but the organisation is not able to endorse, the PRSB will seek a statement of support for the standard. PRSB will ask the following organisations to formally endorse or support the standard:

*   Academy of Medical Royal Colleges
*   Association of Directors of Adult Social Services
*   Association of Directors of Children's Social Services
*   British &amp; Irish Orthoptic Society
*   British Computer Society Health and Care
*   British Dietetic Association
*   British Orthodontic Society
*   British Psychological Society
*   Care Provider Alliance
*   Carers Trust
*   Carers UK
*   Chartered Society of Physiotherapy
*   College of Paramedics
*   Community Practitioners and Health Visitors Association
*   Faculty of Clinical Informatics
*   Institute of Health Records Information Management (IHRIM)
*   Local Government Association
*   National Voices
*   Patient Information Forum
*   Public Health England
*   Queen’s Nursing Institute
*   Resuscitation Council (UK)
*   Royal College of Anaesthetists
* Royal College of Emergency Medicine
* Royal College of General Practitioners
* Royal College of Midwives
* Royal College of Nursing
* Royal College of Obstetricians &amp; Gynaecologists
* Royal College of Occupational Therapists
* Royal College of Ophthalmologists
* Royal College of Paediatrics and Child Health
* Royal College of Pathologists
* Royal College of Physicians
* Royal College of Psychiatrists
* The Faculty of Clinical Radiology (RCR)
* The Faculty of Clinical Oncology (RCR)
* Royal College of Speech and Language Therapists
* Royal College of Surgeons
* Royal Pharmaceutical Society
* Tech UK

### 9 Findings and Recommendations

A summary of the recommendations can be found in the table below:

<table>
  <tbody><tr>
    <td colspan="2"><strong>Recommendations</strong></td>
  </tr>
  <tr>
    <td colspan="2"><strong>Professional and public engagement</strong></td>
  </tr>
  <tr>
    <td>1</td>
    <td>Deliver a joined-up national programme of engagement with the public and health and care professionals covering the core information standard and how it will be used, information governance and implementation. This programme should develop a strong narrative about the important gains to be made from using shared information. The programme should draw on findings from this initial consultation work and support from PRSB’s member organisations as well as other national bodies to deliver clear and consistent messages through trusted channels.</td>
  </tr>
  <tr>
    <td colspan="2"><strong>Implementation</strong></td>
  </tr>
  <tr>
    <td>2</td>
    <td>System levers and incentives should be considered. This could include issuing an Information Standards Notice (ISN) or working with regulators to incorporate the standard into their assessment regimes</td>
  </tr>
  <tr>
    <td>3</td>
    <td>LHCR localities should trial the core information standard alongside the Information Governance Framework. This will enable better understanding of the challenges of implementation, identify the need for refinement of the core information standard and enable the evaluation of the impact on ways of working to support a national rollout.</td>
  </tr>
  <tr>
    <td>4</td>
    <td>Address the concerns about information overload through work to identify what information different end user groups need to see in different situations. Working with key professional groups (e.g. A&amp;E consultants) and vendors to develop a series of best-practise examples for key use cases will greatly enhance understanding and can also be used as a model for live implementation as required.</td>
  </tr>
  <tr>
    <td>5</td>
    <td>The development of a logical data model and technical messaging specifications (FHIR profiles) should be commissioned to enable the technical implementation of the standard. Clinical and professional input is required to ensure that the core information standard is correctly reflected in these technical specifications including addressing the clinical context concerns.</td>
  </tr>
  <tr>
    <td>6</td>
    <td>A further stage of the problem and diagnosis recording work should be commissioned to address the representation of diagnoses and the curation of problem lists.</td>
  </tr>
  <tr>
    <td>7</td>
    <td>Undertake a thorough assessment of the content of the Summary Care Record, and any other interfaces or records that may be retired as a result of the migration to local health and care records, against the core information standard to ensure no content is not lost as a result of the migration.</td>
  </tr>
  <tr>
    <td colspan="2"><strong>Person-centred record</strong></td>
  </tr>
  <tr>
    <td>8</td>
    <td>More work is needed to understand what other information, not currently included in the core information standard, people want to share with professionals, for example health data from mobile devices, and how it could be used to improve care. Further work is also needed to better understand the benefits and effects of people accessing and contributing far more to their health and care records, including more work on the ‘About me’ section, as information is more widely shared. The policy, strategy and safety issues that might arise from this should be addressed nationally so that local differences can be avoided. This should include work with NHS England’s Personalised Care team and a LHCR to pilot use of a personal health record and measure its impact on users and professionals in line with local uses based on real-life scenarios.</td>
  </tr>
  <tr>
    <td colspan="2"><strong>Information governance</strong></td>
  </tr>
  <tr>
    <td>9</td>
    <td>Align the core information standard with the Information Governance Framework when the work has concluded.</td>
  </tr>
  <tr>
    <td>10</td>
    <td>Develop a narrative that describes how the Information Governance Framework will operate in a way that is accessible and understandable to professionals and the public. The framework should be tested in practice by the LHCR localities, alongside the core information standard, to identify and resolve barriers and prove that it works.</td>
  </tr>
  <tr>
    <td colspan="2"><strong>Information sharing between health and social care</strong></td>
  </tr>
  <tr>
    <td>11</td>
    <td>Develop a plan that sets out further engagement and consultation with social care professionals and service users across adult and children’s social services and care providers to ensure that the shared information requirements of social care professionals are reflected in the core information standard. This should build on existing links with the Local Government Association, NHS Digital Social Care programme and The Society for Information Technology Management (SOCITM).</td>
  </tr>
  <tr>
    <td style="background-color: #003366; color: white;" colspan="2">Development of the core information standard</td>
  </tr>
  <tr>
    <td>12</td>
    <td>Develop a consensus-based metadata standard for documents and images for use across the four nations that can then be applied to the core information standard.</td>
  </tr>
  <tr>
    <td>13</td>
    <td>Scope a future programme of work, investigating the inclusion of the information content identified in the consultation as missing from the current version of the core information standard. Feedback should also be obtained from trialling the standard and incorporated into any future work programme.</td>
  </tr>
  <tr>
    <td>14</td>
    <td>PRSB should review existing standards in light of the development of the core information standard to align existing standards with this standard.</td>
  </tr>
</tbody></table>

#### 9.1 Professional and public engagement

Whilst there is a groundswell of opinion that moving towards integrated care records will provide opportunities to improve quality and safety and help support people who access services to have more control and manage their own care, as evidenced in our survey findings, people are also understandably wary about how it would work in practice.

We found considerable confusion and differing assumptions about what the core information standard is and how it will be used. It has proved difficult to socialise the concept of a core information standard as it is different to more straightforward standards with a simple, narrowly defined set of use cases, and people lack a frame of reference and examples of how it could work.

Although there are more than 60 shared care records already in operation across the country at different levels of maturity, the potential to share all the information outlined in the core information standard represents a step change. First the information would be shared across larger geographic areas and on demand across a far wider range of organisations, and professionals. In addition, information would be accessible to people using services and in future they will be able to contribute to their record and by extension care and treatment.

This has the potential to create far more joined-up care that is safer and better and also put people in far more control of their own care.

The transparency that this implies will be far-reaching in its implications and consequences. It will also require that users think and act differently in relation to what information needs to be shared, how it is shared and used to discuss and plan care with colleagues and most importantly people who use services.

There will be a need to re-imagine how services work in light of these advances, with a move towards increased partnership working between citizens and the professionals with whom they interact, and in how service users interact with the technology.

Whilst there is undoubted support for the concept of shared care information, we encountered significant cynicism regarding what would be different this time, in particular how the needs of the ‘users’ (health and care professionals and users of services) would have primacy in driving solutions that meet their needs. Health and care professionals expressed concerns about information overload, ease of access to important and relevant information in time-pressured clinical settings, and their responsibilities in relation to the information (in particular information entered by citizens). There was also concern about how the implementation of the standard would affect highly-valued existing systems and services, for example pharmacists were concerned about the on-going availability of the Summary Care Record and although a policy statement has been issued on this we found limited awareness of this. Citizens expressed concerns about information being shared inappropriately, e.g. with commercial organisations, without their consent, the security of systems and ability to access their information.

Whilst the primary driver for this work was the national LHCR programme, we found substantial interest and engagement from non-LHCRs and strong interest from Scotland and Wales in adopting the standard.

There is a need to build understanding and trust in shared records. This includes how the records will be implemented (the roadmap), the plans for the Summary Care Record, how the information will be used, who it will be shared with, how it will be accessed and how it will be secured. Without this investment in the user perspective alongside delivering the technology, the programme is unlikely to succeed or deliver the benefits to quality and safety of care that are within grasp.

**Recommendation**

1. Deliver a joined-up national programme of engagement with the public and health and care professionals covering the core information standard and how it will be used, information governance and implementation. This programme should develop a strong narrative about the important gains to be made from using shared information. The programme should draw on findings from this initial consultation work and support from PRSB’s member organisations as well as other national bodies to deliver clear and consistent messages through trusted channels.


"There has seemingly been no consultation about national concerns and no-one leading this to engage the public"
PRSB Survey April 2019

#### 9.2 Implementation

There was clear recognition that whilst successful implementation of the technology is essential, it is not enough in isolation to enable achievement of the benefits and adequate consideration of the implications for care professionals in doing their jobs and citizens interacting with them is an essential pre-requisite to drive the required transformation.

Due to the nature of the core information standard and its varied application across a wide range of use cases, the diversity of users, systems and organisations from which the core information could be drawn and the different options for how implementation can be achieved, implementation is inherently very challenging. This will be driven by local use cases and priorities.

Implementation is not constrained within an organisation but will include local health and care systems and potentially interchange of information with any other LHCR localities or care systems anywhere in the country. Rates of implementation will vary with much work to be done to fully consider the implications of sharing information between partners with varying maturity and at different stages in progressing implementation of the core information standard.

A number of considerations for implementation were raised including avoiding information overload and presenting it in a way that it is easily accessible and relevant to the user. There is a risk that without good understanding and design, information is not presented in a way that enables information to be shared which is useful and safe. Concerns were raised, about information being presented differently in different localities, requiring training and familiarisation if moving between geographies.

Concerns were also raised about how data quality would be maintained and how it would be kept up-to-date and accurate. An example highlighted concern about data held on more than one underlying system being inconsistent e.g. blood pressure; emphasising the need for maintaining information about the provenance of the data.

The core information standard draws heavily on existing standards and technical messaging specifications (Fast Healthcare Interoperability Resources or FHIR profiles) exist for some, but not all, of the components. Where they exist, systems suppliers may already have implemented or plan to implement many of these standardised components, minimising the change needed to align to the core information standard. Where they do not exist, it is important that they are commissioned, so that systems suppliers can ensure compliance.

Traditionally, information has been shared between healthcare professionals in different care settings through correspondence such as referral letters, discharge summaries and outpatient letters. A discharge summary may contain a list of diagnoses that were made following investigations or examinations and a list of medications that were prescribed during a stay in hospital. The core information standard changes the way this information is shared. It extracts diagnoses and medications from the discharge summary and puts them alongside other diagnoses or medications prescribed, for example, by a GP or in another setting. It is very important for professionals to be able to understand the clinical context in which a diagnosis was made or a medication prescribed and this was raised as a clinical safety risk as part of the consultation. The principle that no contextual information should be lost when sharing information should be adopted.

Although the core information standard requires that the professional that undertook the activity e.g. a prescription or an examination (along with some additional information about where and when the activity was performed) and the person that recorded that the activity has taken place should be recorded, it does not describe the potential links between the information (for example the link between investigation results and diagnoses or discharge summary and medications). The information model does not contain all the possible links between information and, therefore, the context should be described in the logical data model and FHIR profiles.

The difference in the recording of problems and diagnoses between primary and secondary care was discussed in the consultation. The Royal College of Physicians in conjunction with the PRSB is nearing completion of a piece of work to improve recording of problems and diagnoses (getting consensus on good professional practice). The issue of problem list curation and the need to manually maintain records was discussed by the expert group and it was recognised that further work was needed, taking into account the requirements for systems, and developing a knowledge base on how best to represent different conditions (e.g. a serious diagnosis such as diabetes is always considered 'active'), so that the underlying problem/diagnosis facts can be viewed in a clinically useful way without too much manual effort of problem list curation.

People raised the need for adequate time to be planned into local implementation schedules for training and familiarisation; this is likely to not only be about systems implementation but about re-engineering processes and the deep cultural and mind set shifts required to current behaviours and work practices.

**Recommendations**

1. Deliver a joined-up national programme of engagement with the public and health and care professionals covering the core information standard and how it will be used, information governance and implementation. This programme should develop a strong narrative about the important gains to be made from using shared information. The programme should draw on findings from this initial consultation work and support from PRSB’s member organisations as well as other national bodies to deliver clear and consistent messages through trusted channels. 
2. System levers and incentives should be considered to support adoption. This could include issuing an Information Standards Notice (ISN) or working with regulators to incorporate the standard into their assessment regimes.
3. LHCR localities should conduct robust trialling and testing the core information standard alongside the Information Governance Framework. This will enable better understanding of the challenges of implementation, identify the need for refinement of the core information standard and enable the evaluation of the impact on ways of working to support a national rollout.
4. Address the concerns about information overload through work to identify what information different end user groups need to see in different situations. Working with key professional groups (e.g. A&amp;E consultants) and vendors to develop a series of best-practise examples for key use cases will greatly enhance understanding and can also be used as a model for live implementation as required.
5. The development of a logical data model and technical messaging specifications (FHIR profiles) to enable the technical implementation of the standard should be commissioned. Clinical and professional input is required to ensure that the core information standard is correctly reflected in these technical specifications including addressing the clinical context concerns.
6. A further stage of the problem and diagnosis recording work should be commissioned to address the representation of diagnoses and the curation of problem lists.
7. A thorough assessment should be undertaken of the content of the Summary Care Record, and any other interfaces or records that may be retired as a result of the migration to local health and care records, against the core information standard to ensure no content is not lost as a result of the migration.

### 9.3 Person-centred record

Implementing the core information standard will facilitate a paradigm shift in the relationship between the individual and the professional care provider. There is growing acknowledgement that health and social care is a partnership between individuals and the professionals who provide their care, and that the individuals should be as much at the centre of driving requirements as the professionals.

The implementation of the core information standard also offers people tangible opportunities to be more autonomous and take greater responsibility for their own health. This has been eloquently articulated by the individuals participating in consultation events, including people who use health services, social care and mental health services.

There is much interest in this work from people who use services and their carers and there was a clear message that their requirements are as important as requirements for professionals. For some people, the ability to record important information about themselves such as ‘my religion means I do not want blood transfusions’ or ‘I am a carer for my disabled wife I need to know that if something happens to me that someone will contact her’ or ‘I can get very anxious because I suffer from dementia but the following things calm me down’ in an ‘About me’ section can mean the difference between improved quality of life and supported self-management, or, if not known or ignored, poorer quality of life and dependency upon costly services. Over 80% of survey respondents said that an ‘About me’ section should be prioritised as part of the core information and of all the sections ‘About me’ along with medications and allergies were listed as the most important sections by GPs, secondary care doctors and people who use services. People also said that consideration should be given to providing more structure in the ‘About me’ section.

In consultation discussions, people also raised the availability of person-generated health data (which will rapidly increase over time with more apps and wearables) and the ability to upload this type of information into a record. This phase of work did not specifically include person-generated health data such as blood pressure and therefore, it is something that would require future investigation as to whether and how this type of information would be used in a shared information set to deliver benefits.

Over 50% of the survey respondents were concerned about people contributing to and sharing their information and could foresee issues with this. Concerns were raised in relation to data entered by individuals such as responsibility to review the information and potentially act upon it (raised by GPs), the additional burden of work on the professional, the accuracy and timeliness of the data entered. These would need to be addressed as part of future work.

People using services described how they wanted to access to information to be controlled and this is set out in section 9.4 below.

Concerns were also raised about inequality of access e.g. those not having access to a computer, the elderly, or those with learning difficulties.

Work to date has only scratched the surface of assessing the impact that information sharing, based on the core information standard, will have on citizens and much more needs to be done to understand the benefits and implications.

**Recommendations**

8. More work is needed to understand what other information, not currently included in the core information standard, people want to share with professionals, for example health data from mobile devices, and how it could be used to improve care. Further work is also needed to better understand the effects of people accessing and contributing far more to their health and care records, including more work on the ‘About me’ section, as information is shared more widely. The policy, strategy and safety issues that might arise from this should be addressed nationally so that local differences can be avoided. This should include work with NHS England’s Personalised Care team and a LHCR to pilot use of a personal health record and measure its impact on users and professionals in line with local uses based on real-life scenarios.

"In my experience, the struggle to access my own health records dramatically increased the burden on me as a patient. It resulted in a needless wait of over 15 months for bowel cancer treatment. Throughout these long months I felt powerless, vulnerable, anxious... and very much lost in the system with no access to the information that might empower me to raise concerns and to take greater responsibility for my health.

I’d have loved to see referral letters and communication between providers, knowing where I was in the system, where I was headed, and how long I must wait. I needed a helping hand – information on who was responsible for which aspect of my health and how to contact them.

Yet what I have learnt from the NHS system is that the only person who can be ultimately responsible is the individual themselves and you cannot champion yourself without access to your own medical information. This is why strengthening public voice in record standard projects is so very important"

Laura Fulcher, the patient lead for the project

#### 9.4 Information governance

While people broadly welcome the greater accessibility of digital health and care information, they also rightly seek assurances that their information will be appropriately safeguarded, subject to their control, through robust consent-to-share processes, and audits that are transparent.

Information governance was not within the scope of this work, it is a separate work stream of the national LHCR programme, however it is clearly a major and contentious issue. At the time of writing, the national information governance framework (for sharing information for direct care) is being finalised and hence implications for the core information standard have not yet been fully assessed. Polarised views have been expressed regarding data ownership and access rights, including who owns the information, the model for consent, who has access to what information (would clinical safety override any access controls), what latitude is there for local variance in how the information governance framework is interpreted/implemented?

It is clear that people can only sensibly consider and evaluate the core information standard if they have a clear understanding of how information governance will be managed. There is a risk that people will not engage with the standard if they are not confident in the information governance, the two are inextricable.

A consistent theme among people who use services has been that information should be shared with professionals on a 'need to know' basis and that people should own and have access to all their information. During the consultation it was clear that some people using services would want access to information as soon as it becomes available, e.g. test results, to avoid the anxiety of waiting, however, others may not want this as interpretation of the results may be of concern. Another concern raised was could vulnerable people be coerced into allowing a third party to access their information e.g. an abusive partner?

A further persistent theme was consent. In healthcare, implied consent - a valuable asset - is predicated upon the patient's trust in the professionals providing their care and this works effectively and minimises burden. We found that introducing the concept of a core information standard and far wider sharing of information causes anxiety and an impulse to ‘over-legislate’ with some people suggesting that consent should be sought at multiple levels. Professionals and systems implementers expressed concerns about having to manage potentially complex and layered consent rules, whilst people using services lack confidence and trust in data security and the legitimacy of access in terms of a 'need to know' basis and commercial exploitation.

For care providers in social care, it was identified that there had historically been a lack of investment in information governance and there is variable digital maturity across the sector. However it is recognised that this is changing with the work of NHS Digital’s social care programme which is helping care homes to achieve compliance with its Data Security and Protection Toolkit so that information can be shared.

**Recommendations**

9. Align the core information standard with the Information Governance Framework when the work has concluded.
10. Develop a narrative that describes how the Information Governance Framework will operate in a way that is accessible and understandable to professionals and the public. The framework should be tested in practice by the LHCR localities, alongside the core information standard, to identify and resolve barriers and prove that it works.

#### 9.5 Information sharing between health and social care

Social care covers a large number of professionals and settings including care home providers, domiciliary care providers and councils with different organisations being at different stages of digitisation and standardisation. The different cultures and even language used presents familiar but significant barriers to effective standards-based interoperability between health and care. For this reason, a particular focus was put on social care in the consultation. During the consultation we were told that, in social care, importance is placed on capturing information about the person in descriptive form. This is different from health care which is moving to a much more structured and coded way of capturing information.

Existing standards, including the digital care and support plan, used in the core information standard, such as the standard for digital care and support plans, have previously had input from social care professionals and consultation on the core information standard has also involved social workers and representatives from care homes. It should be noted that there was limited engagement with children’s social services, an area that may require further future work.

Separately, work to explore standards use and barriers to standards adoption in councils was commissioned from the Society for Information Technology Management (SOCITM) by the Local Government Association working with NHS England. The draft SOCITM 'Local Government Social Care and Interoperability Standards Discovery Report' was issued for review and comment in April 2019. PRSB have worked closely and collaboratively with SOCITM and the Local Government Association to align our work including questions fielded to local authorities by SOCITM on our behalf regarding their needs of the core information standard. The report identified that:

"Engagement with councils through this project has highlighted local areas where significant progress is being made to support the sharing of information across health and care (areas including Rotherham and Nottinghamshire).

However, the engagement has also highlighted several themes where councils and system vendors report challenges. There are a range of barriers that have been reported through this discovery from being able to effectively articulate and demonstrate the benefits of interoperability across social care to issues around information governance and data quality.

On the whole, further support to councils in the area of information sharing and standards adoption across care and health is welcomed. However, any approach will need to be multifaceted and start from practical use cases that speak to a social care audience for it to be successful.

Finally, although a standards-based approach was broadly supported by councils this discovery has demonstrated a preference for information sharing initiatives and activity which is local and collaborative rather than national and/or mandated."

Whilst some localities are driving forward excellent work between health and social care, there remains a broad gulf that must be bridged in order to enable seamless provision of care for people and this is reflected in the requirements for sharing of information. The conversations are still in the early stages and there is much still to do. Development of the core information standard has provided a common platform to bring stakeholders together and this should be nurtured and developed.

**Recommendation**

11. Develop a plan that sets out further engagement and consultation with social care professionals and service users across adult and children’s social services and care providers to ensure that the shared information requirements of social care professionals are reflected in the core information standard. This should build on existing links with the Local Government Association, NHS Digital Social Care programme and The Society for Information Technology Management (SOCITM).

#### 9.6 Evolution and further development of the core information standard

The core information standard has been developed through extensive consultation, resulting in a first version which has broad support. This process has facilitated the identification of many issues and, where possible, the standard has tried to address or highlight them in this report. It is also recognised that this standard will develop and evolve as it becomes widely used.

The lack of a PRSB-assured information standard for correspondence (and documents or images) metadata was identified during the initial work mapping for the core information standard, in autumn 2018. It was assumed, at the time, that this would be commissioned and progressed separately. This has not happened and as correspondence, documents and images have been identified as key requirements of the core information standard, a decision was taken to develop a starter-for-ten set of metadata for the core information standard based on the approach being used by the OneLondon LHCR locality and incorporating the PRSB document naming standard. (This will support the transition from unstructured to structured data.) The issue is that there are different metadata approaches for documents already in use across the country and in order to develop a metadata standard acceptable across the four nations, a piece of work to gain consensus on a single national information standard is necessary.

The online survey asked what information was missing from the draft core information standard and although many respondents suggested that the standard was very comprehensive some areas were identified. Examples include:

*   community recording
*   dental and optometry records
*   screening programmes
*   patient entered health data (e.g. from wearables)
*   further work on end of life care plans
*   outcomes recording (https://www.ichom.org/)
*   social determinants of health

The original scope of the core information set included a requirement to be able to link to genetics reports. Whilst the standard supports links to genetic reports in the form of a PDF, it may not support structured genetic information which may be a requirement for the future.

Although this version of the core information standard is an important baseline that will enable progress to be made, it is recognised that further work is needed in some areas and the standard will evolve as it is trialled in practice.

**Recommendations**

12. Develop a consensus-based national metadata standard for documents and images for use across the four nations that can then be applied to the core information standard.
13. Scope a future programme of work, investigating the inclusion of the information content identified in the consultation as missing from the current version of the core information standard. Feedback should also be obtained from trialling the standard and incorporated into any future work programme.
14. PRSB should review existing standards in light of the development of the core information standard to align existing standards with this standard.

### 10 Appendix A datasets

While the detailed content of the longitudinal record will evolve over time, there are some key data items which are expected to be included as part of an individual record and form the basis of the initial longitudinal record. The data required to populate the initial longitudinal record may be drawn a variety of sources including national and local systems.

Data

A longitudinal record is expecting to address the following common core datasets

*   Demographics
*   Examinations
*   Care plans
*   Procedures
*   Assessments
*   Diagnoses
*   Allergies
*   Investigations
*   Correspondence
*   Problems
*   Medication
*   End of life plans
*   Social care
*   Link to genomic reports¹

The detail of this content of each of these datasets will be progressively defined through a process of Exemplar collaboration, and subject to appropriate assurance to ensure that they comply with the information governance framework.

In addition, we expect that there will be additional datasets which extend the common core and which are associated with specific care pathways including, but not limited to,

*   Cancer
*   Maternity
*   Mental health
*   Urgent and emergency care
*   Patient data

Subject to further discussion and agreement, and in line with meeting the requirements of the information governance framework and in particular meeting requirements for a clear

---

¹ This is a specific data class requirement and is expected to simply include link to reports held elsewhere rather than detail.


legal basis for collection and sharing, the record may extend over time to include datasets relating to

*   Specialist clinical content
*   Clinical research related data
*   Patient provided data
*   Data relating to the wider determinants of health for an individual – e.g. housing, education etc.

In addition, we would anticipate LHCREs developing their plans for populating the longitudinal record from existing digitised sources including, but not limited to:

*   Historic data reported to SUS/HES including
    *   historic diagnoses
    *   historic procedures
    *   past appointments
*   Data in near real-time including
    *   pathology results, medications, image reporting
    *   waiting list additions
    *   hospital admissions and discharges
*   The full record from GPs and other digitised care settings

### 11 Appendix B the core information standard

The core information standard can be viewed [here](#).

### 12 Appendix C reference materials

1. Greater Manchester Core Dataset - Defining the Data sets for Organisations (GM Core Dataset Definition 20170620)
2. PRSB Standards for the Structure and Content of Health and Care Records (the PRSB standards) (https://theprsb.org/standards/healthandcarerecords/)
3. Summary Care Record (https://digital.nhs.uk/services/summary-care-records-scr)
4. International Patient Summary (https://art-decor.org/art-decor/decor-project--hl7ips--)
5. Medical Interoperability Gateway (https://healthcaregateway.co.uk/services/detailed-care-record/)
6. USA care co-ordination standard (https://corepointhealth.com/resource-center/white-papers/understanding-continuity-care-record/)
7. https://en.wikipedia.org/wiki/Continuity_of_Care_Record
8. Scottish Emergency Care Record and the Key Information Summary (https://www.nhslothian.scot.nhs.uk/GP/InverleithMedicalPractice/EmergencyCareSummary/Pages/default.aspx)
9. Welsh GP record (http://www.gprecord.wales.nhs.uk/what)
10. Northern Ireland Emergency Care Summary, Electronic Care Record and Key Information Summary (https://www.nidirect.gov.uk/articles/northern-ireland-electronic-care-record-niecr)
11. People in control of their own health and care (the Kings Fund) (https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/people-in-control-of-their-own-health-and-care-the-state-of-involvement-november-2014.pdf)
12. Personalised Health and Care 2020: Using Data and Technology to Transform Outcomes for Patients and Citizens. A framework for action by the National Information Board (https://www.digitalhealth.net/includes/images/news0254/PDF/0172_NHS_England_NIB_Report_WITH_ADDITIONAL_MATERIAL_S8.pdf)
13. Joined Up Leeds: Understanding the views of individuals in Leeds on a Personal Health Record by Brainbox Research (https://www.leedsccg.nhs.uk/content/uploads/2018/05/Summary-Joined-Up-Leeds-report-1.pdf)
14. Personal health record (PHR) User insights by the Health Informatics Unit, Royal College of physicians (https://www.rcplondon.ac.uk/projects/outputs/personal-health-record-phr-user-insights)
15. Personal Health Record Discovery Report by NHS Digital (https://digital.nhs.uk/services/personal-health-records-adoption-service/personal-health-records-adoption-toolkit)

16. Personal Health Records: Learning from voices of experience by Patient Information Forum (https://www.pifonline.org.uk/wp-content/uploads/2017/01/PiF-PHR-Guide-2017-V2.pdf)

17. Personal Health Records: Putting patients in control? by 2020health.org (www.2020health.org/2020health/policy/Policy-A-Z/Patients.html)

18. A Blueprint for a co-produced Personal Health Record (CoPHR) Ecosystem by Apperta Foundation (https://apperta.org/assets/Apperta_A_Blueprint_for_a_Co-produced_Personal_Health_Record_Ecosystem.pdf)

19. Documenting Routinely What Matters to People: Standardized Headings for Health Records of Patients with Chronic Health Conditions by Birgit Prodinger, Paul Rastall, Dipak Kalra, Darren Wooldridge &amp; Iain Carpenter (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5966302/)

20. Personal Health Record (PHR) Landscape Review by the Health Informatics Unit, Royal College of physicians (https://www.rcplondon.ac.uk/projects/outputs/personal-health-record-phr-landscape-review)

21. Personal Health Records: A Systematic Literature Review by Alex Roehrs, Cristiano André da Costa, Rodrigo da Rosa Righi &amp; Kleinner Silva Farias de Oliveira (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5251169/)

22. Technical specifications: EMIS, Vision, TPP, e-Referral service data dictionary, Appointment FHIR, Discovery data service core health set

23. Local Authority data sets: Thames Valley &amp; Surrey - full specifications for adult and child, Greater Manchester - full specifications for adult and child, OneLondon (Newham, Camden), Cheshire Care Record

24. Leeds Care Record (high level information provided by Leeds Care Record team)

25. Information Sharing with Care Homes, PRSB (https://theprsb.org/projects/carehomereport/)

26. End of Life data sets: End of life minimum dataset (NHS Digital), ReSPECT, Coordinate My Care, The Future Planning Project

27. Crisis care summary, PRSB (https://theprsb.org/standards/crisiscare/)

28. Maternity record standard, PRSB (https://theprsb.org/standards/maternityrecord/)

29. Healthy child record, PRSB (https://theprsb.org/standards/healthychildrecordstandard/)

30. Royal College of Emergency Medicine "Mental health clerking detail is commonly poor in ED notes, and without a prompt it is unlikely that doctors will record the key findings that inform risk."
(https://www.rcem.ac.uk/docs/RCEM%20Guidance/Mental%20Health%20Toolkit%202017.pdf)

31. NICE guidance e.g. Self Harm in ED (https://pathways.nice.org.uk/pathways/self-harm#path=view%3A/pathways/self-harm/psychosocial-assessment-of-self-harm-in-the-emergency-department.xml&amp;content=view-index)

32. MIND guidance for people suffering mental health crisis (https://www.mind.org.uk/information-support/guides-to-support-and-services/crisis-services/accident-emergency-ae/#.XFrFFdL7TtQ)

33. RCPsych standards and guidance (https://www.rcpsych.ac.uk/members/your-faculties/liaison-psychiatry/news-and-resources)

34. MHSDS (https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/mental-health-services-data-set)

35. RiO Clinical downtime forms – SWL&amp;St George’s

36. Care Notes data model (ACS)

37. System 1 data model (SABP)

### 13 Appendix D consultees during the discovery phase

<table>
<thead>
<tr>
<th>Consultees</th>
<th>Name</th>
</tr>
</thead>
<tbody>
<tr>
<td>Cambridge University Hospitals NHS Foundation Trust</td>
<td>Afzal Chaudhry</td>
</tr>
<tr>
<td>CWP NHS Foundation Trust</td>
<td>Adrian Burke</td>
</tr>
<tr>
<td>Endeavour Health Charitable Trust</td>
<td>David Stables</td>
</tr>
<tr>
<td>Ex geriatrician, PRSB</td>
<td>Iain Carpenter</td>
</tr>
<tr>
<td>GP, PRSB</td>
<td>Phil Koczan</td>
</tr>
<tr>
<td>Greater Manchester Health &amp; Social Care Partnership</td>
<td>Paul Moore</td>
</tr>
<tr>
<td>Hull and East Yorkshire Hospitals NHS Trust</td>
<td>Mark Simpson</td>
</tr>
<tr>
<td>Leeds Care Record</td>
<td>Julia Millman</td>
</tr>
<tr>
<td>Local Government Association</td>
<td>Mark Golledge</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Nicholas Oughtibridge</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Robert Jeeves</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Marian Tilley</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Keith Strahan</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Mark Nicholas</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>James Palmer</td>
</tr>
<tr>
<td>NHS Dorset Clinical Commissioning Group</td>
<td>Andy Hadley</td>
</tr>
<tr>
<td>NHS England</td>
<td>Ian Townend</td>
</tr>
<tr>
<td>NHS South, Central and West Commissioning Support Unit (CHIE)</td>
<td>Peter Cambouropoulos</td>
</tr>
<tr>
<td>OneLondon</td>
<td>Jo Fulton</td>
</tr>
<tr>
<td>Patient advisor, PRSB</td>
<td>Laura Fulcher</td>
</tr>
<tr>
<td>Patient and Public Engagement Adviser PRSB, Expert Advisory Committee SCR</td>
<td>Judith Brodie</td>
</tr>
<tr>
<td>Patient Information Forum</td>
<td>Sophie Randall</td>
</tr>
<tr>
<td>Royal College of Nursing</td>
<td>Matt Butler</td>
</tr>
<tr>
<td>Salford Royal NHS FT</td>
<td>Scott Watson</td>
</tr>
<tr>
<td>Salford Royal NHS FT</td>
<td>Rebecca Fletcher</td>
</tr>
<tr>
<td>Salford Royal NHS FT</td>
<td>Tim Pattison</td>
</tr>
<tr>
<td>Sheffield Teaching Hospitals NHS Foundation Trust</td>
<td>Karen Selby</td>
</tr>
<tr>
<td>Southern Health NHS FT</td>
<td>Lisa Franklin</td>
</tr>
<tr>
<td>Surrey Heartlands (Surrey Care Record)</td>
<td>Kat Stolworthy</td>
</tr>
<tr>
<td>Thames Valley and Surrey Local Health &amp; Care Records programme</td>
<td>Andrew Fenton</td>
</tr>
<tr>
<td>Tower Hamlets CCG</td>
<td>Bill Jenks</td>
</tr>
<tr>
<td>University of Portsmouth</td>
<td>Philip Scott</td>
</tr>
<tr>
<td>Yorkshire and Humber Care Record Programme</td>
<td>Lee Rickles</td>
</tr>
</tbody>
</table>

### 14 Appendix E project advisors

<table>
  <tbody><tr>
    <th>Project Advisor Role</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>General Practitioner</td>
    <td>John Robinson</td>
  </tr>
  <tr>
    <td>General Practitioner</td>
    <td>Phil Koczan</td>
  </tr>
  <tr>
    <td>Hospital Doctor</td>
    <td>Iain Carpenter</td>
  </tr>
  <tr>
    <td>Mental Health Care Professional</td>
    <td>Matt Butler</td>
  </tr>
  <tr>
    <td>Patient Lead</td>
    <td>Laura Fulcher</td>
  </tr>
  <tr>
    <td>Social Care Professional</td>
    <td>Tommy Reay</td>
  </tr>
</tbody></table>

### 15 Appendix F project stakeholder groups

Key groups of project stakeholders

1. Patients, carers, citizens and service users
   This primarily included representatives from the appropriate member organisations.

2. The LHCR teams
   This primarily included the members of the Clinical Advisory Group but also programme managers, other clinicians, patient representatives, representatives from social services, and clinical informaticians who we are directed to because of this work. Identification of stakeholders within the LHCR teams will occur after initial introduction to the clinical leads.

3. Key vendors
   This primarily included representatives from the appropriate member organisations. This would include system vendors supporting the LHCR localities and other key vendors (from the HSSF).

4. NHS Digital
   The national business and functional architecture team and terminology groups to ensure awareness of this work and alignment.

5. Public Health England
   Engagement to raise awareness of the project, to support future implementation.

PRSB member organisations

Academy of Medical Royal Colleges
* Academy of Medical Royal Colleges
* Royal College of Anaesthetists
* Royal College of Emergency Medicine
* Royal College of General Practitioners
* Royal College of Obstetricians &amp; Gynaecologists
* Royal College of Ophthalmologists
* Royal College of Paediatrics and Child Health
* Royal College of Pathologists
* Royal College of Physicians
* Royal College of Psychiatrists
* Royal College of Radiologists
* Royal College of Surgeons


**Allied Health Professional Federation**

*   Allied Health Professionals Federation
*   Allied Health Professionals Scotland
*   British Association for Music Therapy
*   British Dietetic Association
*   Chartered Society of Physiotherapy
*   Royal College of Occupational Therapists
*   Royal College of Speech and Language Therapists

**Clinical**

*   British Orthodontics Society
*   British Psychological Society
*   Faculty of Clinical Informatics
*   Queen’s Nursing Institute
*   Resuscitation UK
*   Royal College of Midwives
*   Royal College of Nursing
*   Royal Pharmaceutical Society

**Social Care**

*   Association of Directors of Adult Social Services
*   Association of Directors of Children's Social Services
*   Care Provider Alliance
*   Chief Social Worker
*   Community Practitioners and Health Visitors Association

**Patient Organisations**

*   Compassion in Dying
*   National Voices
* Patient Information Forum

**Technology**
* BCS Health and Care
* HL7 UK
* Institute of Health Records Information Management (IHRIM)
* INTEROP en
* Tech UK

**Regulators**
* National Institute for Health and Care Excellence (NICE)

**Government**
* Public Health England

**Four Nations Governments**
* Northern Ireland
* Scotland
* Wales

**International**
* eHealth Ireland

**Other Stakeholder Organisations**
* Association for Palliative Medicine
* Association for Young Peoples’ Health
* Association of Cancer Physicians
* Association of Child and Adolescent Mental Health
* Association of Paediatric Emergency Medicine
* BCS Health
* British &amp; Irish Orthoptic Society
* British Association of Perinatal Medicine
* British Dental Association
* British Geriatrics Society
* British Medical Association
* British Pharmacological Society
* Carers Trust
* Carers UK
* Chief Information Officers Network
* Coalition for Collective Care
* College of Paramedics
* Dementia UK
* Diabetes UK
* Faculty of Intensive Care Medicine
* Four Nations Government NI
* Four Nations Government Scotland
* Four Nations Government Wales
* Genetic Alliance
* Genomics England
* Hospice UK
* International Alliance of Patients’ Organisations
* LHCR Greater Manchester
* LHCR London
* LHCR Thames Valley and Surrey
* LHCR Wessex
* LHCR Yorkshire and Humber
* Local Government Association
* Macmillan Cancer Support
* Mental Health Nurses Association
* NHS Clinical Commissioners (NHSCC)

&amp;
* NHS Digital
* NHS Digital Vendor Network
* NHS England
* PRSB Advisory Board Nominee
* RCP Patient Network
* Royal College of General Practitioners Informatics Group
* The Association of UK Dieticians

Other Networks
* Chief Clinical Information Officers Network

### 16 Appendix G consultation themes and questions (focus group and webinars)

<table>
  <tbody><tr>
    <th>Aims</th>
    <th>Participants</th>
    <th>Consultation questions/themes</th>
    <th>Other considerations</th>
  </tr>
  <tr>
    <td colspan="4"><strong>Citizen focus group</strong></td>
  </tr>
  <tr>
    <td>Understand needs, priorities and preferences of people</td>
    <td>Focus group discussion with six to 10 people who use services and carers to understand their priorities plus, and multi-disciplinary professionals.</td>
    <td>Participants were asked to complete examples of where they have experienced issues with information sharing and to propose solutions on how this could be improved. These were stuck to the walls and participants asked to identify key themes and solutions on post-it notes for each experience and these were then aggregated into common themes and proposals.</td>
    <td></td>
  </tr>
  <tr>
    <td>Ensuring the information enables and encourages greater self-management of care</td>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td colspan="4"><strong>People using services and their carers webinar</strong></td>
  </tr>
  <tr>
    <td>Understand needs, priorities and preferences of people ensuring the information enables and encourages greater self-management of care</td>
    <td>Webinar with people who use services, their carers and multi-disciplinary professionals.</td>
    <td>What would you like to contribute to your health &amp; wellbeing information?<br>If you had a section of information dedicated to you, what would be in it?<br>How could this core information enable you to gain more autonomy and reduce the burden and anxiety of being a ‘patient’?<br>How could the core information provide next steps in your treatment journey?<br>How could the core information record what is most pertinent to you, and what you want to be dealt with?</td>
    <td></td>
  </tr>
</tbody></table>


| | |
|---|---|
| | What might you need to see from the past and how might that be helpful? e.g. past appointments, discharge summaries from previous admissions etc. |
| | How could the core information facilitate better communication? |
| | What information could you anticipate not wanting to share with a carer? |
| | What support would you need to decide what information a carer should be able to see? |
| | How could the core information support carers to fulfil their role? |
| | How could the core information support carers to fulfil their role? |
| | If you could access your results, how and when would you like to receive them? |
| | What documents would you like to access? |
| | e.g. Letters, scans, discharge summaries, results, pathology reports etc. |

**Social care**

| Identify what information should be stored, for what purpose and how in relation to social care. | Led by social care specialist advisor. Social care professionals, providers of care, people who use social care services and carers, as well as clinicians. | Social care professionals, providers of care and people who use services as well as clinicians were asked if data requirements of councils, home care agencies, nursing homes, residential homes and supported living schemes radically different from each other. What does the health-aspect of social care need from health and social care? Language-wise what is lost in translation between health and social care? Child social care information seems to focus on: • Safeguarding | Social care is a broad area with different needs for local authorities, care providers and domiciliary care. Working with LGA/SOCITM to elicit LA and Care Provider Support Service to identify needs of care providers. |



<table>
  <tbody><tr>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>
      <ul>
        <li>Flags e.g. team around the child, special educational needs etc.</li>
      </ul>
      What else should be included?
      How could the PRSB better engage with child social care providers?
      When someone stops receiving social care support, after closing the case what should remain in the core information?
      Should safeguarding be part of the core information?
      How much information should be available?
      How should disabilities be recorded?
      Should temporary disabilities be recorded? e.g. post-operative recovery, side-effects from treatment
      Do social care providers see value in including the primary support reason in the core information?
      Where could primary support reason sit as a data field?
      Should the core information include the details of organisations involved in supporting the individual:
      <ul>
        <li>If the organisation cannot access or add to the core information?</li>
      </ul>
      If there is no supporting context provided, e.g. team around the family (TAF), educational services?
      Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?
    </td>
  </tr>
  <tr>
    <td>Mental Health</td>
    <td></td>
    <td></td>
  </tr>
</tbody></table>


<table>
  <tbody><tr>
    <td>To identify elements of existing standards that should be included in the core</td>
    <td>Led by MH specialist advisor, MHS professionals, BPS network</td>
    <td>Five scenarios were shared with the mental health professionals, psychologists and users of services/carers during this consultation and the following questions were asked in regard to each:</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td><ul><li>What information does this person need in this care setting?</li><li>What’s missing from this picture/scenario?</li><li>What else is there?</li><li>What other benefits/ uses could there be?</li></ul></td>
    <td></td>
  </tr>
  <tr>
    <td>Encounters, alerts, appointments and test orders</td>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>Identify what information should be stored, for what purpose and how in relation to events</td>
    <td>Technical architects informaticians, clinicians and service users for what purpose and how in relation to events etc.</td>
    <td>Clinicians and people who use services were asked what set of information related to events, alerts etc. should be recorded and at what level of detail for retrospective data collection and prospective use.</td>
    <td></td>
  </tr>
  <tr>
    <td>End of life</td>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>Identify what information should be stored, for what purpose and how in relation to end of life care.</td>
    <td></td>
    <td>Clinicians, social care professionals, carers and people using health and care services were asked the following questions as part of the consultation:</td>
    <td>Different place EOL information is represented in the standard?</td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What information do individuals, carers and professionals involved in end of life care think is most valuable?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What are the clinical issues affecting how information is captured and viewed?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>How will patients and carers be affected through sharing the core information?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What are the benefits?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What are the risks?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Do you think a primary diagnosis indicator should be part of the core information?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Should the core information include the details of organisations involved in supporting the individual:</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>If the organisation cannot access or add to the core information?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>If there is no supporting context provided e.g. educational services?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Should the core information include whether the individual is being supported by a local care initiative, which may not be relevant outside of their immediate area?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Is 'end of life' an appropriate name for this section? What could it be named instead?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What information should be recorded about certification of death?</td>
    <td></td>
  </tr>
  <tr>
    <td><strong>Maternity and child health</strong></td>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>To identify elements of existing standards that should be included in the core.</td>
    <td></td>
    <td>Clinicians and women attending the consultation will be asked the following questions:</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Should the whole healthy child record be available from the core record whilst you are a child, similarly with the maternity record for pregnant women?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What elements of the healthy child record would need to stay in the core record when the young person transitions to adult services? Should the maternity record continue to be routinely available after the pregnancy outcome and, if so, for how long?</td>
    <td></td>
  </tr>
</tbody></table>


What elements of the maternity record may be relevant to a pregnant woman who presents to a healthcare professional for something not directly relevant to her maternity care?

Should safeguarding concerns be included in the LHCR record, which is available to all health care professionals and patients?

Should detailed pregnancy outcome delivery and birth information be included in the core record or just the obstetric history of the maternity record?

Is blood transfusion history / refusal of blood transfusion relevant for a core record?

Should the “Immunisations” section be renamed “vaccinations”?

In the family history section, the core record does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include?

Should local authority for the child protection plan and looked after child status be included in the core record?

### 17 Appendix H Webinar and focus group attendees

#### End of life webinar

<table>
<thead>
<tr>
<th>Organisation</th>
<th>Name</th>
</tr>
</thead>
<tbody>
<tr>
<td>ADASS</td>
<td>David Watts</td>
</tr>
<tr>
<td>Barts Health NHS Trust</td>
<td>Philippa Evans</td>
</tr>
<tr>
<td>Carer</td>
<td>Ann Richardson</td>
</tr>
<tr>
<td>CareWorks</td>
<td>Martin Hanlon</td>
</tr>
<tr>
<td>Compassion in Dying</td>
<td>Upeka de Silva</td>
</tr>
<tr>
<td>Compassion in Dying</td>
<td>Zach Moss</td>
</tr>
<tr>
<td>Coordinate My Care</td>
<td>Julia Riley</td>
</tr>
<tr>
<td>Dorset Care Record</td>
<td>Ellie Venton</td>
</tr>
<tr>
<td>DXC Technology</td>
<td>Rhona Dalziel</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Dawn Boswell-Challand</td>
</tr>
<tr>
<td>Greater Manchester &amp; Eastern Cheshire End of Life Care</td>
<td>Christine Taylor</td>
</tr>
<tr>
<td>LAS and Healthy London Partnership</td>
<td>Briony Sloper</td>
</tr>
<tr>
<td>Log my Care</td>
<td>Sam Hussain</td>
</tr>
<tr>
<td>London Ambulance Service</td>
<td>Frank Neaves</td>
</tr>
<tr>
<td>Macmillan</td>
<td>Jo Keyes</td>
</tr>
<tr>
<td>Macmillan</td>
<td>Jo Keyes</td>
</tr>
<tr>
<td>Marches Care</td>
<td>Mandy Thorn</td>
</tr>
<tr>
<td>Mountbatten</td>
<td>Richard Eason</td>
</tr>
<tr>
<td>NHS England</td>
<td>Eileen Mitchell</td>
</tr>
<tr>
<td>NHS England</td>
<td>Joanne Brooks</td>
</tr>
<tr>
<td>NHS England</td>
<td>Rhodri Joyce</td>
</tr>
<tr>
<td>NHS England</td>
<td>Diana Robinson</td>
</tr>
<tr>
<td>NHS England</td>
<td>Irene Mitchell</td>
</tr>
<tr>
<td>NHS Lincolnshire East CCG</td>
<td>Sue Jarvis</td>
</tr>
<tr>
<td>North East London NHS Foundation Trust</td>
<td>Phil Koczan</td>
</tr>
<tr>
<td>Patient Information Forum</td>
<td>Sophie Randall</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Alan Craig</td>
</tr>
<tr>
<td>PRSB</td>
<td>James Burton</td>
</tr>
<tr>
<td>PRSB</td>
<td>Kasmyn Chen</td>
</tr>
<tr>
<td>PRSB</td>
<td>Martin Orton</td>
</tr>
<tr>
<td>PRSB</td>
<td>Pauline Swan</td>
</tr>
<tr>
<td>PRSB</td>
<td>Sandip Kaur</td>
</tr>
<tr>
<td>PRSB Clinical Advisor</td>
<td>Iain Carpenter</td>
</tr>
<tr>
<td>Resuscitation Council</td>
<td>Rachel Warren</td>
</tr>
<tr>
<td>Royal College of Physicians HIU</td>
<td>Jan Hoogewerf</td>
</tr>
<tr>
<td>Royal College of Physicians HIU</td>
<td>Lindsay Dytham</td>
</tr>
<tr>
<td>Salisbury District Hospital</td>
<td>Suzie Neaves</td>
</tr>
<tr>
<td>SOCITM</td>
<td>Abbas Awan</td>
</tr>
<tr>
<td>South Tyneside NHS Foundation Trust</td>
<td>Edward Nowicki</td>
</tr>
</tbody>
</table>


| Southern Health NHS Foundation Trust | Steve Plenderleith |
|---|---|
| St Barnabas Hospice | Lawrence Pike |
| Surrey and Borders Partnership NHS Foundation trust | Doug Stewart |
| The Royal British Legion | Alan Downey |
| The Royal British Legion | Ian Cooper |
| The Royal British Legion | Sharon Devi |

People using services and their carers webinar

<table>
<thead>
<tr>
<th>Organisation</th>
<th>Name</th>
</tr>
</thead>
<tbody>
<tr>
<td>8 foldhealth</td>
<td>Lyndon Johnson</td>
</tr>
<tr>
<td>Accessible Info</td>
<td>Howard Leicester</td>
</tr>
<tr>
<td>Carer</td>
<td>Sabin Qureshi</td>
</tr>
<tr>
<td>Dorset Care Record</td>
<td>Ellie Venton</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Dawn Boswell-Challand</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Qaez Anwar</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Dawn Boswell-Challand</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Qaez Anwar</td>
</tr>
<tr>
<td>Greater Manchester Health and Social Care Partnership</td>
<td>Stephen Dobson</td>
</tr>
<tr>
<td>Health One Global</td>
<td>Stanley Shepherd</td>
</tr>
<tr>
<td>MIND</td>
<td>Paul Ward</td>
</tr>
<tr>
<td>NHS Connecting for Health</td>
<td>Miles Gray</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Simon Rose</td>
</tr>
<tr>
<td>NHS Digital PHR Programme</td>
<td>Andy Payne</td>
</tr>
<tr>
<td>NHS England</td>
<td>John Farenden</td>
</tr>
<tr>
<td>NHS England</td>
<td>Diana Robinson</td>
</tr>
<tr>
<td>Patient Information Forum</td>
<td>Sophie Randall</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Alan Craig</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Kalina Zaborowska</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Ron Newall</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Suzanne Elsworth</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Patrick Ojeer</td>
</tr>
<tr>
<td>Patients Know Best</td>
<td>Shailesh Suri</td>
</tr>
<tr>
<td>PRSB</td>
<td>Alannah McGovern</td>
</tr>
<tr>
<td>PRSB</td>
<td>Helene Feger</td>
</tr>
<tr>
<td>PRSB</td>
<td>Kasmyn Chen</td>
</tr>
<tr>
<td>PRSB</td>
<td>Pauline Swan</td>
</tr>
<tr>
<td>PRSB Carer</td>
<td>Holly Kearn</td>
</tr>
<tr>
<td>PRSB Clinical Advisor</td>
<td>Laura Fulcher</td>
</tr>
<tr>
<td>Resuscitation Council</td>
<td>Rachel Warren</td>
</tr>
<tr>
<td>Royal College of Physicians HIU</td>
<td>Nicola Quinn</td>
</tr>
</tbody>
</table>



Social care webinar

<table>
  <tbody><tr>
    <th>Organisation</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>ADASS</td>
    <td>David Watts</td>
  </tr>
  <tr>
    <td>Alzheimer's society</td>
    <td>Francesca Markland</td>
  </tr>
  <tr>
    <td>BCS</td>
    <td>Andy Kinnear</td>
  </tr>
  <tr>
    <td>Care Provider Alliance</td>
    <td>Ian Turner</td>
  </tr>
  <tr>
    <td>co4cc</td>
    <td>Laura Bimpson</td>
  </tr>
  <tr>
    <td>Community Integrated Care</td>
    <td>Jason Hengler</td>
  </tr>
  <tr>
    <td>Dorset County Council</td>
    <td>Brian Hole</td>
  </tr>
  <tr>
    <td>Graphnet</td>
    <td>Barry Keown</td>
  </tr>
  <tr>
    <td>Graphnet</td>
    <td>Dawn Boswell-Challand</td>
  </tr>
  <tr>
    <td>Health and Social Care Alliance</td>
    <td>Zahid Deen</td>
  </tr>
  <tr>
    <td>Health One Global</td>
    <td>Stanley Shepherd</td>
  </tr>
  <tr>
    <td>Heart of England Mencap</td>
    <td>Ali Arnold</td>
  </tr>
  <tr>
    <td>Imperial College Healthcare NHS Trust</td>
    <td>Stephen Janering</td>
  </tr>
  <tr>
    <td>LHCR Yorkshire and Humber</td>
    <td>Neil Bartram</td>
  </tr>
  <tr>
    <td>Local Government Association</td>
    <td>Mark Golledge</td>
  </tr>
  <tr>
    <td>NHS Digital</td>
    <td>Keith Strahan</td>
  </tr>
  <tr>
    <td>NHS South Central and West CSU</td>
    <td>Gary McKelvey</td>
  </tr>
  <tr>
    <td>Norse Care</td>
    <td>Ben Meen</td>
  </tr>
  <tr>
    <td>PossAbilities CIC</td>
    <td>Amanda Higgs</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Kasmyn Chen</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sandip Kaur</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sarah Jackson</td>
  </tr>
  <tr>
    <td>PRSB Clinical Advisor</td>
    <td>Iain Carpenter</td>
  </tr>
  <tr>
    <td>Royal College of Physicians HIU</td>
    <td>Nicola Quinn</td>
  </tr>
  <tr>
    <td>SeeAbility</td>
    <td>Donna O'Brien</td>
  </tr>
  <tr>
    <td>Skills for care</td>
    <td>Rob Hargreaves</td>
  </tr>
  <tr>
    <td>SOCITM</td>
    <td>Russ Charlesworth</td>
  </tr>
  <tr>
    <td>Southern Health</td>
    <td>Steve Plenderleith</td>
  </tr>
  <tr>
    <td>Surrey County Council</td>
    <td>Claire White</td>
  </tr>
  <tr>
    <td>The Royal British Legion</td>
    <td>Ian Cooper</td>
  </tr>
  <tr>
    <td>Trafford Council</td>
    <td>Paul Dean</td>
  </tr>
</tbody></table>

Mental health webinar

<table>
  <tbody><tr>
    <th>Organisation</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>Graphnet</td>
    <td>Qaez Anwar</td>
  </tr>
  <tr>
    <td>Graphnet</td>
    <td>Dawn Boswell-Challand</td>
  </tr>
  <tr>
    <td>MIND</td>
    <td>Rachel Boyd</td>
  </tr>
  <tr>
    <td>MIND</td>
    <td>Rachel Boyd</td>
  </tr>
  <tr>
    <td>NHS Digital</td>
    <td>Ian Binns</td>
  </tr>
  <tr>
    <td>NHS England</td>
    <td>Hilary Tovey</td>
  </tr>
  <tr>
    <td>Oxleas NHS Foundation Trust</td>
    <td>James Woollard</td>
  </tr>
</tbody></table>



| Park Medical Centre, Cambridge | Janice Allister |
|---|---|
| Patient and Public | Meg Hunt |
| PRSB | James Burton |
| PRSB | Martin Orton |
| PRSB | Helene Feger |
| PRSB | Sarah Jackson |
| PRSB | Annette Gilmore |
| RCGP | Jill Rasmussen |
| Remind me Care | Simon Hooper |
| Royal College of Nursing | Matt Butler |
| Royal College of Psychiatrists | Sarah Hickling |
| SLAM | Nicola Byrne |
| West Midlands Academic Health Science Network | Sarah Appleby |

Maternity and healthy child webinar

<table>
<thead>
<tr>
<th>Organisation</th>
<th>Name</th>
</tr>
</thead>
<tbody>
<tr>
<td>Cambio Healthcare</td>
<td>Tina Hanlon</td>
</tr>
<tr>
<td>Carer</td>
<td>Sabin Qureshi</td>
</tr>
<tr>
<td>CSC</td>
<td>Rhona Dalziel</td>
</tr>
<tr>
<td>East Suffolk And North Essex NHS Foundation Trust</td>
<td>John Lamont</td>
</tr>
<tr>
<td>K2 Medical Systems</td>
<td>Kate Jamieson</td>
</tr>
<tr>
<td>Medway NHS Foundation Trust</td>
<td>Vicki Gannon</td>
</tr>
<tr>
<td>Medway NHS Foundation Trust</td>
<td>Andrea curling</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Sarah Ashcroft</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Chris Dickson</td>
</tr>
<tr>
<td>NHS England</td>
<td>Rhodri Joyce</td>
</tr>
<tr>
<td>NHS England</td>
<td>Steven Dodd</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>Natasha Neads</td>
</tr>
<tr>
<td>Oxford Health</td>
<td>Victoria Kirby</td>
</tr>
<tr>
<td>Park Medical Centre - Cambridge</td>
<td>Janice Allister</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Natalie Leal</td>
</tr>
<tr>
<td>Patients and Public</td>
<td>Emily Roberts</td>
</tr>
<tr>
<td>Poole Hospital NHS Trust</td>
<td>Dawn Jackson</td>
</tr>
<tr>
<td>PRSB</td>
<td>Alannah McGovern</td>
</tr>
<tr>
<td>PRSB</td>
<td>Helene Feger</td>
</tr>
<tr>
<td>PRSB</td>
<td>James Burton</td>
</tr>
<tr>
<td>Public Health England</td>
<td>David Elliman</td>
</tr>
<tr>
<td>RCOG</td>
<td>Karen Selby</td>
</tr>
<tr>
<td>Resuscitation Council</td>
<td>Rachel Warren</td>
</tr>
<tr>
<td>Royal College of Physicians HIU</td>
<td>Lindsay Dytham</td>
</tr>
<tr>
<td>Royal Surrey County Hospital NHS Foundation Trust</td>
<td>Alison Wooderson</td>
</tr>
<tr>
<td>West Midlands Academic Health Science Network</td>
<td>Sarah Appleby</td>
</tr>
<tr>
<td>West Midlands Academic Health Science Network</td>
<td>Elaine Russell</td>
</tr>
</tbody>
</table>


Encounters, alerts, appointments and test orders webinar

<table>
  <tbody><tr>
    <th>Organisation</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>Endeavour Health Charitable Trust</td>
    <td>David Stables</td>
  </tr>
  <tr>
    <td>Graphnet</td>
    <td>Dawn Boswell-Challand</td>
  </tr>
  <tr>
    <td>Greater Manchester Health and Social Care Partnership</td>
    <td>Malcolm Mundy</td>
  </tr>
  <tr>
    <td>Leeds teaching hospitals NHS trust</td>
    <td>Daniel Wootton</td>
  </tr>
  <tr>
    <td>Leeds teaching hospitals NHS trust</td>
    <td>Nigel Hodgson</td>
  </tr>
  <tr>
    <td>NHS Dorset CCG</td>
    <td>Andy Hadley</td>
  </tr>
  <tr>
    <td>NHS England</td>
    <td>John Robinson</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Alannah McGovern</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>James Burton</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sarah Jackson</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sandip Kaur</td>
  </tr>
  <tr>
    <td>PRSB Clinical Advisor</td>
    <td>Iain Carpenter</td>
  </tr>
  <tr>
    <td>Royal College of Physicians HIU</td>
    <td>Jan Hoogewerf</td>
  </tr>
  <tr>
    <td>Yorkshire and Humber Care Record Programme</td>
    <td>Tony Shannon</td>
  </tr>
</tbody></table>

Citizen focus group

<table>
  <tbody><tr>
    <th>Representing</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>Patients</td>
    <td>Geoffrey Entwistle</td>
  </tr>
  <tr>
    <td>Patients &amp; Carers</td>
    <td>Ceri McDade</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Kasmin Chen</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Pauline Swan</td>
  </tr>
  <tr>
    <td>PRSB Patient Lead and self</td>
    <td>Laura Fulcher</td>
  </tr>
  <tr>
    <td>RCP Patient Carer Network and self</td>
    <td>Richard Triffit</td>
  </tr>
  <tr>
    <td>Self</td>
    <td>Nannette Spain</td>
  </tr>
  <tr>
    <td>Self</td>
    <td>Ron Newell</td>
  </tr>
  <tr>
    <td>Self</td>
    <td>Patrick Ojeer</td>
  </tr>
  <tr>
    <td>Self</td>
    <td>John March</td>
  </tr>
  <tr>
    <td>Self - but involved with many organisations</td>
    <td>Victor Boulter</td>
  </tr>
  <tr>
    <td>Self &amp; family</td>
    <td>Mary Mulwila</td>
  </tr>
  <tr>
    <td>Self &amp; family, useMY data, variety of research</td>
    <td>Margaret Johnson</td>
  </tr>
  <tr>
    <td>UNTRAP; CLROVWN; PILAR; carers</td>
    <td>Andrew Entwhistle</td>
  </tr>
</tbody></table>

### 18 Appendix I consultation themes and questions (workshop)

<table>
  <tbody><tr>
    <th>Aims</th>
    <th>Participants</th>
    <th>Consultation questions/themes</th>
    <th>Other considerations</th>
  </tr>
  <tr>
    <td><strong>Core Information</strong></td>
    <td><strong>All</strong></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>Test the core standard is understood and deemed useful. To determine what information needs to be shared and the practical benefits and potential consequences of doing so.</td>
    <td></td>
    <td><strong>Workshop attendees were asked the following questions, which are based on a number of scenarios that were posed to the group.</strong></td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Does the core information meet the needs and enable better care in the scenario you have been given?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>- For professionals delivering services?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>- For people using services?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Which parts of the core information will be particularly valuable in this scenario and why? What are the risks of not sharing this information to a person’s safe care and outcomes?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Is all the core information needed (according to the criteria discussed)? What information is missing and why is it needed?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>What are the most important areas of core information that should be shared, e.g. clinical data for emergency care? Functional data for care of the elderly? Risk assessments for mental health crisis care? Person-centred data such as about me, wellbeing data, functional abilities? What are the risks and challenges you see in this information being shared?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>The scenarios for session two describe people with specific needs for health and social care support. Does this change what should be included in the core information about these users of services in order to support safe and effective care?</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td>How would it help a person take more control of their own health and care? How could it help an informal carer or a third sector provider of care?</td>
  </tr>
  <tr>
    <td></td>
    <td>In what situations would it be useful to see social care narrative assessments rather than the fact that an assessment has taken place?</td>
  </tr>
  <tr>
    <td></td>
    <td>Do you have any concerns about sharing the information? How could those concerns be addressed?</td>
  </tr>
  <tr>
    <td></td>
    <td>Should core information include patient/user collected data, goals?</td>
  </tr>
  <tr>
    <td></td>
    <td>How should this information be used in providing care?</td>
  </tr>
  <tr>
    <td></td>
    <td>Should the core include more information to help people to better understand their medications?</td>
  </tr>
  <tr>
    <td></td>
    <td>What information should be in the core information set on temporary or permanent disability? PRSB standards currently include accessibility information.</td>
  </tr>
  <tr>
    <td></td>
    <td>What types of patient-provided information such as values, goals, functional ability, wellbeing is useful in a mental health setting?</td>
  </tr>
  <tr>
    <td></td>
    <td>Should genetic test information be included in core information or flagged?</td>
  </tr>
  <tr>
    <td></td>
    <td>Is there any core information that needs to be collected after death? Is it necessary to include it in the core information?</td>
  </tr>
  <tr>
    <td></td>
    <td>Is primary support reason (e.g. a physical health issue that requires social care support and is recorded by social care) useful for health care professionals?</td>
  </tr>
  <tr>
    <td></td>
    <td>Should anything identified as abnormal be part of the core information – how do we identify what is abnormal? (e.g. high blood pressure during pregnancy)</td>
  </tr>
  <tr>
    <td></td>
    <td>Should safeguarding information be included as core information?</td>
  </tr>
  <tr>
    <td></td>
    <td></td>
    <td>Should developmental skills remain part of core information after a child with special needs transitions to adult care?</td>
    <td></td>
  </tr>
</tbody></table>

### 19 Appendix J workshop attendees

<table>
  <tbody><tr>
    <th>Organisation</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>Carer<br>co4cc</td>
    <td>Amanda Rudczenko<br>Laura Bimpson</td>
  </tr>
  <tr>
    <td>Compassion in Dying</td>
    <td>Natalie Koussa</td>
  </tr>
  <tr>
    <td>Faculty of Clinical Informatics</td>
    <td>John Williams</td>
  </tr>
  <tr>
    <td>Genomics England</td>
    <td>Amanda O'Neill</td>
  </tr>
  <tr>
    <td>Guy's and St Thomas'</td>
    <td>Gary McAllister</td>
  </tr>
  <tr>
    <td>Gwent and South Powys</td>
    <td>Julian Costello</td>
  </tr>
  <tr>
    <td>Royal College of Physicians</td>
    <td>Jan Hoogewerf</td>
  </tr>
  <tr>
    <td>IHRIM</td>
    <td>Kim Bellis</td>
  </tr>
  <tr>
    <td>IMS Maxims</td>
    <td>Michael Thick</td>
  </tr>
  <tr>
    <td>LHCR Greater Manchester</td>
    <td>Gareth Thomas</td>
  </tr>
  <tr>
    <td>Local Government Association</td>
    <td>Mark Golledge</td>
  </tr>
  <tr>
    <td>Macmillan</td>
    <td>Rebecca Wellburn</td>
  </tr>
  <tr>
    <td>Macmillan</td>
    <td>Samuel Dick</td>
  </tr>
  <tr>
    <td>Marches Care</td>
    <td>Mandy Thorn</td>
  </tr>
  <tr>
    <td>NHS Digital</td>
    <td>Keith Strahan</td>
  </tr>
  <tr>
    <td>NHS Digital PHR Programme</td>
    <td>Andy Payne</td>
  </tr>
  <tr>
    <td>NHS Dorset CCG</td>
    <td>Andy Hadley</td>
  </tr>
  <tr>
    <td>NHS England</td>
    <td>John Farenden</td>
  </tr>
  <tr>
    <td>NHS England</td>
    <td>Oliver Benson</td>
  </tr>
  <tr>
    <td>NHS North West Surrey CCG</td>
    <td>Kat Stolworthy</td>
  </tr>
  <tr>
    <td>NHS South, Central and West CSU</td>
    <td>Andrew Fenton</td>
  </tr>
  <tr>
    <td>NUH</td>
    <td>Michael Azad</td>
  </tr>
  <tr>
    <td>Oxleas NHS Foundation Trust</td>
    <td>James Woollard</td>
  </tr>
  <tr>
    <td>Patients and Public</td>
    <td>Alan Craig</td>
  </tr>
  <tr>
    <td>Patients and Public</td>
    <td>Andrew Entwhistle</td>
  </tr>
  <tr>
    <td>Patients and Public</td>
    <td>Annie Makowf-Clark</td>
  </tr>
  <tr>
    <td>Patients and Public</td>
    <td>Geoffrey Entwhistle</td>
  </tr>
  <tr>
    <td>Patients and Public</td>
    <td>Manjit Johal</td>
  </tr>
  <tr>
    <td>Personalised Care Group, NHS England</td>
    <td>Jo Harvey</td>
  </tr>
  <tr>
    <td>PHE</td>
    <td>Clare Jones</td>
  </tr>
  <tr>
    <td>PIF</td>
    <td>Sophie Randall</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Alannah McGovern</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Maureen Baker</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Annette Gilmore</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Helene Feger</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>James Burton</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Kasmyn Chen</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Lorraine Foley</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Pauline Swan</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sandip Kaur</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Sarah Jackson</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Lizzie Cernik</td>
  </tr>
  <tr>
    <td>PRSB Clinical Adviser</td>
    <td>Iain Carpenter</td>
  </tr>
  <tr>
    <td>PRSB Clinical Adviser</td>
    <td>John Robinson</td>
  </tr>
  <tr>
    <td>PRSB Clinical Adviser</td>
    <td>Phil Koczan</td>
  </tr>
  <tr>
    <td>PRSB Patient Lead</td>
    <td>Laura Fulcher</td>
  </tr>
  <tr>
    <td>PRSB/Carer</td>
    <td>Holly Kearn</td>
  </tr>
  <tr>
    <td>Public Health Agency</td>
    <td>Claire Buchner</td>
  </tr>
  <tr>
    <td>RCOT</td>
    <td>Suzy England</td>
  </tr>
  <tr>
    <td>RCP</td>
    <td>Matt Butler</td>
  </tr>
  <tr>
    <td>RCP HIU</td>
    <td>Lindsay Dytham</td>
  </tr>
  <tr>
    <td>RCPCH</td>
    <td>David Low</td>
  </tr>
  <tr>
    <td>RCSLT</td>
    <td>Kathryn Cann</td>
  </tr>
  <tr>
    <td>Royal College of Psychiatrists</td>
    <td>Laurie Beed</td>
  </tr>
  <tr>
    <td>Royal Free London NHS FT</td>
    <td>Maria McCrann</td>
  </tr>
  <tr>
    <td>RPharmS</td>
    <td>Stephen Goundrey-Smith</td>
  </tr>
  <tr>
    <td>Scottish government</td>
    <td>Steve Baguley</td>
  </tr>
  <tr>
    <td>SLAM</td>
    <td>Omer Moghraby</td>
  </tr>
  <tr>
    <td>SLAM</td>
    <td>Nicola Bryne</td>
  </tr>
  <tr>
    <td>SOCITM</td>
    <td>Russ Charlesworth</td>
  </tr>
  <tr>
    <td>Southampton CCG</td>
    <td>Mark Kelsey</td>
  </tr>
  <tr>
    <td>West London Mental Health Trust</td>
    <td>Jonathan Scott</td>
  </tr>
  <tr>
    <td>Yorkshire and Humber Care Record Programme</td>
    <td>Tony Shannon</td>
  </tr>
  <tr>
    <td>Yorkshire and Humber Care Record Programme</td>
    <td>Lee Rickles</td>
  </tr>
</tbody></table>

### 20 Appendix K survey design

<table>
  <tbody><tr>
    <td>Aims</td>
    <td>Participants</td>
    <td>Consultation questions/themes</td>
    <td>Other considerations</td>
  </tr>
  <tr>
    <td><strong>Survey</strong></td>
    <td></td>
    <td></td>
    <td></td>
  </tr>
  <tr>
    <td>To test a draft of the core information standard model with a wide group of service users and care providers.</td>
    <td><strong>All</strong></td>
    <td>1. Please tell us your role.<br>
        2. Please describe the setting in which you work.<br>
        3. Do you agree that sharing core information will bring these benefits?<br>
        -Improve the quality and safety of care<br>
        -Make care more efficient<br>
        -Lead to better integration between services<br>
        -Support people to take more control and manage their own care<br>
        -Support better care planning and research<br>
        4. What concerns do you have about sharing core information?<br>
        5. Which of the following benefits would people who use services get from contributing to the information held in their health and care records? For example, recording their needs, values and preferences or measurements they have taken such as blood pressure.<br>
        -Improve communication including the timeliness of information sharing e.g. sharing test results<br>
        -Promote people managing their own care<br>
        -Support making joint decisions with professionals about their care<br>
        -Improve efficiency, e.g. avoid repeating information<br>
        -Reduce burden on professionals</td>
    <td></td>
  </tr>
  <tr>
    <td></td>
    <td>-Improve safety</td>
  </tr>
  <tr>
    <td></td>
    <td>6. Can you see any issues arising as a result of people who use services contributing to and sharing their information?</td>
  </tr>
  <tr>
    <td></td>
    <td>7. Please rate how important this information is to you. Think about what information it would be helpful to know that you can’t currently access.</td>
  </tr>
  <tr>
    <td></td>
    <td>-About me</td>
  </tr>
  <tr>
    <td></td>
    <td>-Demographics and contacts</td>
  </tr>
  <tr>
    <td></td>
    <td>-Legal Information</td>
  </tr>
  <tr>
    <td></td>
    <td>-Social context</td>
  </tr>
  <tr>
    <td></td>
    <td>-Family history</td>
  </tr>
  <tr>
    <td></td>
    <td>-Relevant past history</td>
  </tr>
  <tr>
    <td></td>
    <td>-Pregnancy status</td>
  </tr>
  <tr>
    <td></td>
    <td>-Safeguarding and risks</td>
  </tr>
  <tr>
    <td></td>
    <td>-Medications and allergies</td>
  </tr>
  <tr>
    <td></td>
    <td>Investigations, examinations and assessments</td>
  </tr>
  <tr>
    <td></td>
    <td>-Problems, diagnoses, conditions and procedures</td>
  </tr>
  <tr>
    <td></td>
    <td>-Plan and requested actions</td>
  </tr>
  <tr>
    <td></td>
    <td>for professionals and the person, including investigations and treatments</td>
  </tr>
  <tr>
    <td></td>
    <td>-Vaccinations</td>
  </tr>
  <tr>
    <td></td>
    <td>-Developmental skills</td>
  </tr>
  <tr>
    <td></td>
    <td>-Participation in research</td>
  </tr>
  <tr>
    <td></td>
    <td>-Alerts</td>
  </tr>
  <tr>
    <td></td>
    <td>8. What if anything is missing from the above list?</td>
  </tr>
  <tr>
    <td></td>
    <td>9. Should 'about me' be prioritised as part of the core information for everyone involved in health and care?</td>
  </tr>
  <tr>
    <td></td>
    <td>10. Should alerts (e.g. metallic implant, dangerous dogs) be flagged as part of the core information set?</td>
  </tr>
  <tr>
    <td></td>
    <td>11. Should assessment summaries (which include written assessment outcomes for social care and mental health) be included in the core information set?</td>
  </tr>
  <tr>
    <td></td>
    <td>12. This subsection is called risks. Does 'risks' describe this section well and is this what you would expect to see in it?</td>
  </tr>
  <tr>
    <td></td>
    <td>13. Date, location, performing professional, Gynaecology, past obstetric: is this all the information you need to share as part of the core information set about an individual's past pregnancy history?</td>
  </tr>
  <tr>
    <td></td>
    <td>14. Should current pregnancy status be part of the core information set?</td>
  </tr>
  <tr>
    <td></td>
    <td>15. Should the core information set include correspondence such as outpatient letters or letters from patients?</td>
  </tr>
  <tr>
    <td></td>
    <td>16. Should the core information set include details of historic (now closed) child protection plans? (A child protection plan acts to keep a child safe from abuse and neglect.)</td>
  </tr>
  <tr>
    <td></td>
    <td>17. Should disability be included as a separate section in the core information set? (Mobility, cognitive and accessibility disabilities are currently recorded in individual requirements)</td>
  </tr>
  <tr>
    <td></td>
    <td>18. Is this all the information needed for end of life care as part of the core information set?</td>
  </tr>
  <tr>
    <td></td>
    <td>19. Do you have any other comments you would like to add before submitting the survey?</td>
  </tr>
</tbody></table>

### 21 Appendix L expert review group (attendees)

<table>
  <tbody><tr>
    <th>Expert Group Role</th>
    <th>Name</th>
  </tr>
  <tr>
    <td>Consultant Psychiatrist &amp; CCIO &amp; clinical informatician</td>
    <td>James Reed</td>
  </tr>
  <tr>
    <td>Emergency care physician</td>
    <td>Tony Shannon</td>
  </tr>
  <tr>
    <td>Ex geriatrician &amp; clinical informatician</td>
    <td>Iain Carpenter</td>
  </tr>
  <tr>
    <td>Ex GP &amp; expert clinical informatician</td>
    <td>Ian McNicoll</td>
  </tr>
  <tr>
    <td>Ex GP, Newcastle Uni &amp; clinical informatician</td>
    <td>Nick Booth</td>
  </tr>
  <tr>
    <td>General Practitioner</td>
    <td>John Robinson</td>
  </tr>
  <tr>
    <td>General Practitioner &amp; clinical informatician</td>
    <td>Phil Koczan</td>
  </tr>
  <tr>
    <td>MH Nurse &amp; clinical informatician</td>
    <td>Matt Butler</td>
  </tr>
  <tr>
    <td>North Yorks county council, LHCR (social care)</td>
    <td>Neil Bartram</td>
  </tr>
  <tr>
    <td>Physio (AHP)</td>
    <td>Euan McComiskie</td>
  </tr>
  <tr>
    <td>Renal physician, CCIO &amp; clinical informatician</td>
    <td>Afzal Chaudhry</td>
  </tr>
  <tr>
    <td>Surgeon &amp;CCIO</td>
    <td>Dermott O’ Riordan</td>
  </tr>
</tbody></table>

### 22 Appendix M expert review group questions

Questions from the first expert review group meeting (1 May 2019)

#### General questions

1. Does the overall structure of the model make sense to you?

2. Is anything included that you don't think is necessary for the first release?

3. Retaining the clinical context of the information has been raised as a clinical safety risk. The maternity shared record work introduced the use of the following elements to provide some contextual information:

   * Performing professional (the professional linked to the record entry)
   * Date (the date of the activity day/month/year, e.g. the date that the procedure took place)
   * Location (the organisation/institution at which the activity took place e.g. the hospital at which the procedure took place)

Is performing professional required as we don’t know what it is – for example when testing blood – is the performing professional the person who ordered the test, the person who took the sample, the clinical scientist who actually performed the assay or the consultant/GP responsible for the order at a senior level – or perhaps all of these? Should specialty be added as an additional contextual data item?

4. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. It has been discussed that in order to be clinically safe, these links need to be articulated in the model. However, links between information types may depend on use cases and this information model is designed to be generic and should apply to multiple use cases. What are your views on whether the links should be defined in the PRSB information model?

5. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows:

   * Minimise the number of mandatory data items.
   * The only mandatory sections are patient demographics and GP practice.
   * All other sections are required because if the information is there it expected to be part of the record.
   * At element level some items are mandatory all others are required

Does this approach make sense, or should some items be optional if they were optional in other standards, e.g. in the medications and medical devices section?

Specific Questions

6. Does “plans and requested actions” make sense as a separate section when not linked to a clinical summary or a discharge summary (for example) – is there sufficient context, if not how should we demonstrate context?
   • Does “plans and requested actions” overlap with investigations requested – should we include investigations requested underneath plans and requested actions?

7. In encounters - discharge, attendance, admission – is sufficient information included, for example does clinical summary need to be included with discharge?

8. Is there a need to record an assessment of a carer’s competence – this came up in the workshop. If so, could this be recorded under assessments?

9. Should we record if a person is interested in taking part in a clinical trial – this came up in a webinar?

10. Correspondence has been raised as a requirement. There is currently no metadata standard to support correspondence. This was highlighted as a gap in the discovery work. What metadata should be captured about a piece of correspondence?

11. Should we include a distribution list for letters?

12. We have replaced the immunisations section with vaccinations – do we need to add the following elements to cover self-reported vaccinations:

   • Reported date: The date or partial date that the reported vaccination was given in the opinion of the person and/or parent/carer
   • Primary source: An indication that the content of the record is based on information from the person who administered the vaccine. This reflects the context under which the data was originally recorded.
   • Report origin: The source of the data when the report of the vaccination event is not based on information from the person who administered the vaccine.

13. The core information standard does not include a heading for maternal medical conditions or infectious diseases arising in pregnancy which may have an impact on the foetus – would this be relevant to include? Outside of the neonatal period it may not be required. This query came up in the maternity webinar.

14. What is normal for a patient was discussed in two contexts – in relation to observations and in relation to their general wellbeing.

   • Observations are already recorded under examination findings. Is it useful to record what is normal, e.g. able to use stairs etc in the core information – where should this be recorded?

15. One of the issues raised has been about some terms having a specific meaning with health or social care with potentially different definitions for the same term. Do any of the section or element names fall into this category?

16. The following came up in the workshop – do we want to include these?

*   A record of birth parents
*   Status of relationships, e.g. with father
*   History of relationships, e.g. when did people become foster parents?

17. Should we record reasonable adjustments (this has been raised in relation to social care and mental health)?

**Questions related to specific sections**

**Patient demographics**

18. Do we need to be able to capture a temporary residence, e.g. if someone is temporarily in a nursing home? Relates to end of life wishes about where someone wants to die.

19. Should we add patient activation status?

**Personal contacts**

20. Should we add in a comments field so that information about why a personal contact is important can be recorded?

**Problems and issues and diagnosis**

21. Problems and issues and diagnoses are currently separate sections – do we need both sections in the standard?

**Disabilities section – potential new section**

22. Is a section for disability required to support the recording and sharing of disability information, e.g. learning difficulties (this was raised by social care and mental health professionals) or would this be covered in either individual requirements (mobility and cognitive needs) or through problems/issues &amp; diagnoses?

23. There is a requirement to support reasonable adjustments – is this a flag or is more information required?

**Pregnancy status – new section**

24. Does this section support the requirement to flag whether someone is pregnant?

25. Is the section name correct – pregnancy status – or should it be called something else?

**Social Context**

26. Do we need to include primary support reason (from social care systems)?

27. Does equipment provided to the service user, e.g. wheel chair ramp need to be recorded? Where should it be recorded? Could it be recorded under devices or under services and care (in social context)?

28. Is the services and care element within social context sufficient for recording the social care services a person receives?

29. We will incorporate the new standards developed in Birmingham which uses AUDIT C for alcohol intake – this standard has been previously approved and is likely to be adopted by the PRSB. Is there an equivalent assessment for drug use?

<u>Assessment scales (changed to assessments)</u>

30. We have added in the following elements to capture output from social care and mental health:
   a. An assessment element to capture narrative assessments (for social care and mental health)
   b. Assessment summary to capture a summary of an assessment
   c. Formulation to provide a diagnostic summary of mental health assessments

Do we also need to include an element for assessment type?

31. Would the Frailty Index: electronic Frailty Index (eFI) used by GP / Clinical Frailty Score used by clinicians be covered by assessment scales?

<u>Future Appointments</u>

32. Does this allow the capture of social care appointments (e.g. someone visiting the person to provide domiciliary care or to undertake a care needs assessment)?

<u>Questions from the second expert review group meeting (16 May 2019)</u>

1. Retaining clinical context of the information has been raised as a clinical safety risk. The core information standard uses the following:

   * Performing professional (the professional linked to the record entry)
   * Date (the date of the activity day/month/year, e.g. the date that the procedure took place)
   * Location (the organisation/institution at which the activity took place, e.g. the hospital at which the procedure took place)

We have reviewed this section by section and have used “performing professional” to mean different things in different sections. In some sections we have also added person completing the record where the performing professional may be different from the person that recorded the information. Does this approach make sense?

2. An additional concern raised, related to question three above, is that the information model does not articulate the links between the different types of information. For example, a diagnosis would be linked to an encounter/consultation and a diagnosis may be linked to an investigation result or an assessment. We are proposing that in the information guidance we include reference to the fact that all links between information need to be retained and that this is addressed in the logical data model work.

3. The principles we have used to define whether a section, cluster or element is mandatory, required or optional are as follows:

*   Minimise the number of mandatory data items.
*   The only mandatory sections are patient demographics and GP practice.
*   All other sections are required because if the information is there it expected to be part of the record.
*   At element level some items are mandatory all others are required.

We have now implemented this approach in the model and reviewed changes to MRO inherited from existing standards with clinical advisors. Do you support this approach in release one?

4. We have recognised the need to review descriptions and, in some instances, amend the description used in the standard the element was taken from. An example being we have amended the use of patient to person. Are you happy with this approach?

5. The last expert group review recognised a tension between generic and specific sections in the information model, an example being the discussion on information contained in the pregnancy section and the recognition pregnancy was a condition. We have however left the pregnancy section in the model as an exception to the generic approach as due date is not covered elsewhere in the information standard. Are you happy with this exception?

6. We have removed the history section from the information model on the basis that medical and mental health history would be included in problem lists, surgical history would be included in procedures. We are unclear however whether obstetric history, e.g. history of stillbirth and whether the pregnancy outcome resulted in a live birth would be recorded in “problem lists”?

7. We have been made aware of a specific concern about merging diagnosis and problems and issues into a single section - problem lists – which was the approach taken for the maternity record. What are your views on this?

8. We are not proposing a separate disabilities section because we believe that information contained in the generic problem list section should accommodate disabilities information. Support for people with disabilities would be included in the individual requirements section – would this section cover reasonable adjustments? Are you happy with this approach?

9. We have removed the developmental skills section because we believe that information would be covered under observations. Are you happy with this approach?

10. We have removed the person expectations, concerns and wishes section as we believe the information contained in it is duplicated in the ‘about me’ section of the Core Information Standard. Are you happy with this approach?

11. We have retained a correspondence section and plan to include metadata based on the OneLondon definition of correspondence metadata. We propose to take a similar approach to documents and images/scans. These sections are ‘catch alls’ for where correspondence, documents and images are not specifically referenced in other sections. Are you happy with this approach?

12. We are assuming that results of genetic testing could be supported by the investigation results section. Is that correct?

13. There have been many queries about what consent needs to be captured for sharing information but also other types of consent. We have three types of consent defined in the core information standard (as below). Are these required in the core information standard?
*   Consent for information sharing
*   Consent relating to a child
*   Consent for treatment

14. Plans are included in a number of places in the model. Are all these sections required? Where would birth plans, EoL plans, MH crisis care plans be covered?:
*   Plans and requested actions
*   Care and support plans
*   Contingency plans
*   Additional supporting plans.

### 23 Appendix N supplier webinar questions

1. Is the scope of the PRSB’s work on the core information standard clear?
2. Does the scope of the core information standard seem over ambitious?
3. Are the outputs of the PRSB’s work clear?
4. Is the expectation about the issues that will be addressed locally reasonable?
5. Do suppliers support the design principles and the approach to developing the standard, including the consultation process?
6. Are there other information ‘artefacts’ that suppliers would like to see developed centrally?
7. Are suppliers happy with the structure of the information model, MRO and value sets?
8. What are supplier views on the areas for further work:
   * Retaining context of the information
   * Sharing documents and images

### 24 Appendix O supplier webinar attendees

<table>
<thead>
<tr>
<th>Organisation</th>
<th>Name</th>
</tr>
</thead>
<tbody>
<tr>
<td>Allscripts Healthcare (IT)</td>
<td>Paula Cross</td>
</tr>
<tr>
<td>ATOS</td>
<td>Elaine Bennett</td>
</tr>
<tr>
<td>Cerner</td>
<td>Ben McAlister</td>
</tr>
<tr>
<td>Cerner</td>
<td>Oezcitak Ertugrul</td>
</tr>
<tr>
<td>DXC Technology</td>
<td>Nilesh Jain</td>
</tr>
<tr>
<td>DXC Technology</td>
<td>Derek Fleming</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Colin Innes</td>
</tr>
<tr>
<td>Graphnet</td>
<td>Dawn Boswell-Challand</td>
</tr>
<tr>
<td>Kainos software</td>
<td>Alastair Allen</td>
</tr>
<tr>
<td>Kainos software</td>
<td>Graham Lyttle</td>
</tr>
<tr>
<td>NHS Arden and Greater East Midlands CSU</td>
<td>Pavani Yatham</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Michael Bond</td>
</tr>
<tr>
<td>NHS Digital</td>
<td>Zac Whitewood-Moores</td>
</tr>
<tr>
<td>NHS England</td>
<td>Catherine Leggett</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>Shauna McMahon</td>
</tr>
<tr>
<td>Orion Health</td>
<td>Bally Toor</td>
</tr>
<tr>
<td>PA Consulting</td>
<td>Jeremy Thorp</td>
</tr>
<tr>
<td>PA Consulting</td>
<td>Proteus Duxbury</td>
</tr>
<tr>
<td>Philips UK &amp; Ireland</td>
<td>Dennis Polling</td>
</tr>
<tr>
<td>PRSB Clinical Advisor</td>
<td>Philip Scott</td>
</tr>
<tr>
<td>PRSB Patient lead</td>
<td>Laura Fulcher</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>John O'Connell</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>Mike Mcmillan</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>Catherine Dampney</td>
</tr>
<tr>
<td>NHS South, Central and West CSU</td>
<td>Kate Toomey</td>
</tr>
<tr>
<td>Tech UK</td>
<td>Michael Thick</td>
</tr>
<tr>
<td>The HCI Group</td>
<td>Estelle Davies</td>
</tr>
</tbody>
</table>

## Clinical Safety Case Report
April 2026

### Document Management

#### Revision History

<table>
  <tbody><tr>
    <th>Version</th>
    <th>Date</th>
    <th>Summary of Changes</th>
  </tr>
  <tr>
    <td>0.1</td>
    <td>03/07/2019</td>
    <td>First draft created by Dr Annette Gilmore (AG)</td>
  </tr>
  <tr>
    <td>0.2</td>
    <td>08/07/2019</td>
    <td>Updated by Dr John Robinson (JR), CSO</td>
  </tr>
  <tr>
    <td>0.3</td>
    <td>12/07/2019</td>
    <td>Updated by Dr Annette Gilmore following meeting with JR</td>
  </tr>
  <tr>
    <td>0.4</td>
    <td>24/07/2019</td>
    <td>Updated following comments from CSC meeting and Hazard log workshop attendees</td>
  </tr>
  <tr>
    <td>0.4</td>
    <td>09/08/2019</td>
    <td>Reviewed and agreed by PRSB Assurance Committee</td>
  </tr>
  <tr>
    <td>0.5</td>
    <td>06/08/2019</td>
    <td>Final edits by Dr John Robinson</td>
  </tr>
  <tr>
    <td>0.6</td>
    <td>16/08/2019</td>
    <td>Edits to include late feedback.</td>
  </tr>
  <tr>
    <td>1.0</td>
    <td>16/08/2019</td>
    <td>Version to distribute to NHS Digital Clinical Safety Team</td>
  </tr>
  <tr>
    <td>1.1</td>
    <td>30/09/2019</td>
    <td>'Sex and Gender Risk mitigated by implementation' - NHSD Clinical Safety Group comments addressed by JR and AG Following advice from NHSD CSG additional information was added to CIS Implementation Guidance (version 1.2) regarding all CIS risks and 'sex' field</td>
  </tr>
  <tr>
    <td>1.2</td>
    <td>29/09/2020</td>
    <td>First draft created by James Critchlow. This is an updated version of the Core Information Standard (CIS) Safety Case, which now includes Digital Social Care Information products made up of an updated standard for "About Me", a standard for the sharing of data from Local Authorities and guidance on which sections of the CIS should be in the Care Homes view.</td>
  </tr>
  <tr>
    <td>1.3</td>
    <td>07/10/2020</td>
    <td>Updated by Dr John Robinson</td>
  </tr>
  <tr>
    <td>1.4</td>
    <td>29/10/2020</td>
    <td>Updated following assurance committee feedback on hazard log</td>
  </tr>
  <tr>
    <td>1.5</td>
    <td>29/10/2020</td>
    <td>Appendix B removed</td>
  </tr>
  <tr>
    <td>1.6</td>
    <td>09/03/2021</td>
    <td>Edits made following feedback from NHS Digital Clinical Safety Team</td>
  </tr>
  <tr>
    <td>1.7</td>
    <td>06/04/2021</td>
    <td>Edits made following feedback from NHS Digital Clinical Safety Team</td>
  </tr>
  <tr>
    <td>1.8</td>
    <td>28/04/2026</td>
    <td>Updated to reflect changes made to the sex and gender data items in the standard.</td>
  </tr>
</tbody></table>

#### Reviewed by
This document must be reviewed by the following people:


<table>
<thead>
<tr>
<th>Name</th>
<th>Signature</th>
<th>Date</th>
</tr>
</thead>
<tbody>
<tr>
<td>Clinical Safety Officer</td>
<td>Dr John Robinson</td>
<td>30/10/2020</td>
</tr>
<tr>
<td>PRSB Assurance Committee</td>
<td>PRSB Assurance Committee</td>
<td>07/10/2020</td>
</tr>
<tr>
<td>Clinical Safety Officer (for review of changes related to changes to sex and gender data items)</td>
<td>Dr Steve Bentley</td>
<td>28/04/2026</td>
</tr>
</tbody>
</table>

#### Approved by

This document must be approved by the following people:

<table>
<thead>
<tr>
<th>Name</th>
<th>Signature</th>
<th>Date</th>
</tr>
</thead>
<tbody>
<tr>
<td>Clinical Safety Officer</td>
<td>Dr John Robinson</td>
<td>30/10/2020</td>
</tr>
<tr>
<td>PRSB Assurance Committee</td>
<td>PRSB Assurance Committee</td>
<td>07/10/2020</td>
</tr>
<tr>
<td>Project Board</td>
<td>Project Board</td>
<td>30/09/2020</td>
</tr>
<tr>
<td>NHS Digital Clinical Safety Group</td>
<td>NHS Digital Clinical Safety Group</td>
<td>01/04/2021</td>
</tr>
<tr>
<td>Clinical Safety Officer</td>
<td>Dr Steve Bentley</td>
<td>28/04/2026</td>
</tr>
</tbody>
</table>

#### Glossary of Terms

<table>
<thead>
<tr>
<th>Term / Abbreviation</th>
<th>What it stands for</th>
</tr>
</thead>
<tbody>
<tr>
<td>CCG</td>
<td>Clinical Commissioning Group</td>
</tr>
<tr>
<td>CIS</td>
<td>Core Information Standard</td>
</tr>
<tr>
<td>COVID-19</td>
<td>Coronavirus disease 2019</td>
</tr>
<tr>
<td>CPR</td>
<td>Cardio - Pulmonary Resuscitation</td>
</tr>
<tr>
<td>CQC</td>
<td>Care Quality Commission</td>
</tr>
<tr>
<td>CSCR</td>
<td>Clinical Safety Case Report</td>
</tr>
<tr>
<td>CSG</td>
<td>Clinical Safety Group</td>
</tr>
<tr>
<td>CSMS</td>
<td>Clinical Safety Management System</td>
</tr>
<tr>
<td>CSO</td>
<td>Clinical Safety Officer</td>
</tr>
<tr>
<td>DCB</td>
<td>Data Coordination Board</td>
</tr>
<tr>
<td>dm+d</td>
<td>Dictionary of Medicine and Devices</td>
</tr>
<tr>
<td>EHR</td>
<td>Electronic Health Record</td>
</tr>
  <tr>
    <td>EMIS</td>
    <td>Egton Medical Information Systems</td>
  </tr>
  <tr>
    <td>FHIR</td>
    <td>Fast Healthcare Interoperability Resources</td>
  </tr>
  <tr>
    <td>GDPR</td>
    <td>General Data Protection Regulation</td>
  </tr>
  <tr>
    <td>GP</td>
    <td>General Practitioner</td>
  </tr>
  <tr>
    <td>GUI</td>
    <td>Graphical User Interface</td>
  </tr>
  <tr>
    <td>IG</td>
    <td>Information Governance</td>
  </tr>
  <tr>
    <td>IHD</td>
    <td>Ischaemic Heart Disease</td>
  </tr>
  <tr>
    <td>ISN</td>
    <td>Information Standard Notice</td>
  </tr>
  <tr>
    <td>IT</td>
    <td>Information Technology</td>
  </tr>
  <tr>
    <td>KPI</td>
    <td>Key Performance Indicator</td>
  </tr>
  <tr>
    <td>LCR</td>
    <td>Local Care Record</td>
  </tr>
  <tr>
    <td>NHS</td>
    <td>National Health Service</td>
  </tr>
  <tr>
    <td>NHSD</td>
    <td>NHS Digital</td>
  </tr>
  <tr>
    <td>NHSE</td>
    <td>NHS England</td>
  </tr>
  <tr>
    <td>NPSA</td>
    <td>National Patient Safety Agency</td>
  </tr>
  <tr>
    <td>OPCS</td>
    <td>Office of Population Censuses and Surveys Classification</td>
  </tr>
  <tr>
    <td>OTC</td>
    <td>Over the Counter</td>
  </tr>
  <tr>
    <td>PAS</td>
    <td>Patient Administration System</td>
  </tr>
  <tr>
    <td>Patient</td>
    <td>Subject of the record</td>
  </tr>
  <tr>
    <td>PDS</td>
    <td>Patient Demographic Service</td>
  </tr>
  <tr>
    <td>PRSB</td>
    <td>Professional Record Standards Body</td>
  </tr>
  <tr>
    <td>RBAC</td>
    <td>Role Based Access Control</td>
  </tr>
  <tr>
    <td>READ</td>
    <td>READ - coded thesaurus of clinical terms</td>
  </tr>
  <tr>
    <td>SNOMED CT®</td>
    <td>Systematized Nomenclature of Medicine – Clinical Terms</td>
  </tr>
</tbody></table>

### Related Documents


<table>
<thead>
<tr>
<th>Ref no</th>
<th>Title</th>
</tr>
</thead>
<tbody>
<tr>
<td>[1]</td>
<td><u>Persons Core Information Standard v1, July 2019, Professional Record Standards Body;</u></td>
</tr>
<tr>
<td>[2]</td>
<td><u>Core Information Standard: Survey Results and Analysis, July 2019, Professional Record Standards Body;</u></td>
</tr>
<tr>
<td>[3]</td>
<td><u>DCB0129: Clinical Risk Management: its Application in the Manufacture of Health IT Systems;</u></td>
</tr>
<tr>
<td>[4]</td>
<td><u>Core Information Standard Final Report v1, July 2019, Professional Record Standards Body;</u></td>
</tr>
<tr>
<td>[5]</td>
<td><u>Digital Social Care Information Final Report v1, September 2020, Professional Record Standards Body;</u></td>
</tr>
<tr>
<td>[6]</td>
<td><u>DCB0160: Clinical Risk Management: its Application in the Deployment and Use of Health IT Systems;</u></td>
</tr>
</tbody>
</table>

### 1 Executive Summary and Safety Statement

This is an updated version of the Core Information Standard (CIS) Safety Case, which now includes Digital Social Care Information products made up of an updated standard for “About Me”, a standard for the sharing of data from Local Authorities and guidance on which sections of the CIS should be in the Care Homes view. This clinical safety case should be reviewed on an annual basis.

This PRSB Core Information Standard (CIS) standard [Ref.1] has been developed following extensive consultation with patients, carers and other citizens, health and care professionals and system vendors as set out in the Core Information Standard Final Report and Core Information Standard Survey Results and Analysis Report [Ref.2]. It is intended to be used as the standard set of headings, under which data can be viewed in any shared care record, with a clear aim that different shared care records should be interoperable. Local care records (LCR) will consist of data from multiple sources in both health and social care settings. It will not include all data from all sources and is intended to be information that is felt to be important to share.

PRSB has been asked to define a CIS, which is “A set of “Concept” headings, referred to as “Sections” under which users need to be able to view the data. This will sit in a local care record; the development and design of which will be done locally.”

However, the data viewable under these sections is entirely dependent on the source data being shared and processed appropriately so that the correct information is available under the right section at the right time and is readily accessible. The user experience is dependent on the design of the systems and the graphical user interface (GUI). All these things on which the sections are dependent are out of scope of this clinical safety review.

The CIS is only a single component of a shared care record and a separate end to end safety case will need to be made for each record system. Such a safety case may reference this clinical safety case for the Core Information Standard element of it.

The CIS model does not contain all the contextual information available for data items and therefore it is not expected that the Core Information Standard will be the only view available in any shared record system.

The CIS view of information is over and above and in no way a replacement for existing health record systems. It is also a “Core” record and will not, by definition, contain all data.

The safety case is for a read only record for direct care and if it should become a read/write record and source of original data, the safety case would need to be reviewed. Any use for secondary uses of the data should also consider any clinical safety impacts.

The Hazard workshop for the CIS identified 30 hazards. The addition of the digital social care information products identified an additional six hazards. The review as a result of changes to the sex and gender data items resulted in a change to one hazard and the addition of another hazard. Thirty one of these have an acceptable residual risk of 2. The remaining six have a residual risk of 3, which includes two of the new hazards.

Many of the hazards are concerning the data, which could be missing, misplaced, inaccurate or conflicting and potentially present but inaccessible. Mitigations for all of these include system design and training.

There are hazards related to some specific sections. These are Allergies, Medications, Problems and Diagnoses, Alerts and Care plans. In these areas the concerns are about the different data models in contributing systems and the need for training in both using local care records and recording data in source systems, which needs to be shared. Also, the significance of getting the information wrong.

One hazard was initially identified as being at risk level 4 is:

**Hazard 16: Sex data item may cause accidental disclosure of gender reassignment without consent.** However, this hazard was subsequently re-evaluated as a result of updates to the standard and clarification of the disclosure risk and scored 3, reduced to 2 on mitigation. The hazard now reads as follows:
Hazard 16: Recording an individual's 'Gender identity' alongside their 'Sex at birth (observed)' in their clinical record and displaying together along with 'Administrative gender' (derived from the Personal Demographics Service) may cause accidental disclosure of transgender, non-binary or gender diverse status causing psychological harm.

The other hazards with a residual undesirable risk level of 3 are:

*   **Hazard 8: The context or provenance of the information is lost, unknown or misunderstood.** The CIS is a set of sections under which information is displayed, but that this view does not allow all the useful context and provenance of the information. Other views of the data should be made available using the relationships between data items defined in the Logical Data Model for LCRs. The addition of data from Local Authorities (which may include child protection or vulnerable adult data) and the About Me section, (which is created by the subject of the record or their proxy) have increased the importance of users of the system understanding the source of the data and its context when making judgements on the validity of an entry.

*   **Hazard 11: Significant problems, diagnoses, conditions or procedures are not visible to healthcare user.** The Problems and Diagnoses section it is recognized that further work needs to be done to develop a clear idea of precisely what data should be contained in it. Methods for updating and curating the data will also need to be established.

* **Hazard 24: Failure to adopt the CIS.** The development of the CIS standard needs to be supported in its adoption by promotion by NHS Digital, NHS England, PRSB, social care bodies including care home and local authority representatives and pharmacy bodies and stakeholder organisations who have provided endorsement for the standard. The heterogeneity in the data items recorded by different local authorities and care homes will increase this risk as certain centres may consider the scope of the standards as limited or difficult to implement. Failure to adopt it risks multiple different models being adopted, resulting in lack of interoperability and lack of user familiarity. Leading to loss of benefit and potential patient harm.

* **Hazard 25: CIS used out of scope.** The safety case is based on the CIS being used in scope. The heterogeneity in the data items recorded by different local authorities and care homes will increase this risk as certain centres may consider the scope of the standards as limited or difficult to implement. The implementation guidance should be followed.

* **Hazard 30: Patient data error in interconnecting systems (Out of scope for Middleware Manufacturer noted here for Health Organisation only).** The addition of data from Local Authorities has increased this risk to a level 3 and it remains at this level of residual risk. Identifying demographics information should be obtained from established sources such as the Patient Administration System [PAS] or national Patient Demographic Service [PDS]) – however, it is recognised that data may be missing, incorrect, incomplete, out of date or corrupt; creating a clinical safety risk. Local Authorities have identified significant issues in NHS number tracing, which is legal requirement.

* **Hazard 31 – Data in the legal section misunderstood or missing:** The importance of being able to locate original documents was strongly emphasised. It is critical during transfers of care that there are processes in place to ensure original documents (e.g. DNACPR forms) can be viewed and mechanisms are there to ensure that these documents are up to date. It is recognised that national solutions are currently being sought to this problem.

All risks identified in the Hazard log are transferred, to those who incorporate the Core Information Standard and the Digital Social Care information into their EHR (Electronic Health Record). There are mitigations and training recommended for the risks that should be undertaken where possible to reduce them to the lowest possible risk.

Any safety incidents occurring, which might be due to the CIS must be reported promptly to the PRSB for review.

#### 2.1 Purpose of Local Care Records and the PRSB Core Information Standard

The aim of the local health and care records programme is to help local organisations move from today’s position, where each health and care organisation holds separate records for the individuals they care for, to one where an individual’s records are connected up from across the health and care system.

This will help health and care professionals to share information safely and securely as the people they care for move between different parts of the NHS and social care. It also enables individuals to be able to access their own records irrespective of which part of the health and care system that has provided them with their care. The design of such Patient portals is out of scope of this safety review.

The PRSB Local Care Records’ Core Information Standard has been developed following extensive consultation with patients, carers and other citizens, health and care professionals and system vendors. It is intended to be used as a standard set of sections, under which data can be viewed in all local care records, with a clear aim that different LCRs should be interoperable.

The Core Information Standard (CIS) gives one view of the data. A data item should only appear under one section, although this is not a hard and fast rule. It does not show all the relationships of data items. In addition, users may see filtered views of the CIS depending on the setting and situational requirements e.g. views based on the PRSB Care Homes View, About Me, Local Authority Information, Digital Care and Support Plan etc. Electronic health records generally allow the user to view the data in several different ways and these are used to validate and further understand the history of the record subject – the patient/ service user. For instance, a journal or historic view may be compared with a problem orientated view or an encounter or episode orientated view. The logical data model being developed by NHS Digital and PRSB is designed to hold links between the data items and provide the context and provenance of the data. It may be used by the system designers to develop a variety of other views of the data. It is therefore expected that the Core Information Standard will not be the only view available in any shared record system.

The Core Information Standard view of the data is supplementary to the primary clinical systems. It is a way of sharing more data about a record subject and should therefore contribute to improving the quality and safety of care. The addition of this view is over and above and in no way a replacement for existing record systems.

The LCR is for a read only interface initially. This safety case is for a read only record for direct care and if it should become a read/write record and source of original data, the safety case would need to be reviewed.







#### 2.2 Purpose of the Clinical Safety Case Report

This Clinical Safety Case Report (CSCR) for the Local Care Record Core Information Standard (CIS) addresses the requirements of DCB/ ISB 0129 V4.2 Clinical Risk Management: it’s Application in the Manufacture of Health IT Systems [Ref.3].

The full application of DCB0129 cannot be applied, as the professional standard itself is not a manufactured health IT system. However, the guidance within DCB0129 concerning clinical risk management and appropriately governed hazard assessment has been considered. Compliance to requirements from DCB0129 are summarised in section 14.

### 3 System Definition / Overview / Scope

Local care records will consist of data from multiple sources in both health and social care settings. It will not include all data from all sources and is intended to be information which is felt to be important to share.

The data will be shared with the LCR using FHIR resources and APIs. It will then be normalised and de-duplicated before being stored in, in most cases, a database. The design of the database is expected to be informed by the logical data model, for the LCRs, being developed by NHS Digital. This will define the provenance, context and relationships of data items.

Some LCRs may dispense with the database and pull data when it needs to be viewed.

The LCR Core Information Standard is a set of “Concept” sections under which users need to be able to view the data. This is not necessarily a physical entity and data may be rendered in that view at time of access.

There are currently in excess of sixty local shared care records in operation across the country. NHS England has established a programme, the Local Health and Care Records (LHCR) programme, to expand the coverage of local shared care records to cover larger populations. This will make important information available to health and care professionals and people using services across wider geographic areas, covering populations of three to five million, to improve the quality of care and care co-ordination. In order to realise these benefits, the core information standard was developed which defines and standardises the type of information that should be shared by systems that will talk to one another across health and social care, with the right safeguards in place.

The original standard was developed in two phases: the first phase reviewed evidence from existing standards and shared care records in order to produce a draft core information standard. This was achieved by mapping NHS England’s definition of the core information set, the Greater Manchester core dataset and the PRSB Standards for the Structure and Content of Health and Care Records (PRSB 2018) against the national and international standards and records. These are all referenced in the CIS final report [Ref.4]. The second phase developed the standard in key areas where it was seen that further work was needed (e.g. mental health and social care). The PRSB carried out broad and in-depth consultation and engagement across health and social care using online workshops, a national deliberative face to face workshop, social media (to obtain more diverse input from the public), expert reviews, an online workshop for vendors and an online survey. This allowed the content of the information standard to be refined and started to build awareness and support among all the key groups with an interest in information sharing in health and care.

This update to the standard includes Digital Social Care Information, which consists of a standard for data being shared from local authority records into the CIS, a revised standard for the “About Me” section, which is now much more structured than previously and guidance on a “Care Homes” view of the data. These additions were developed in the same manner as the main CIS, with a review of the evidence then wide stakeholder consultation.

The standard does not define how the data is viewed in individual systems, which will be down to the individual GUI of each system. The data items under each section will retain information about the date the item was recorded and the author of it. However other pieces of contextual data such as which encounter, problem or document it was a part of, are not be part of the standard. The logical data model is expected to manage these links; other views of the data based on that are expected to be created to show more provenance and context but are not a part of this standard.

#### 3.1 Illustration of shared care record creation

This is a graphical representation of the process involved in creating the local shared care patient record. It illustrates the interdependencies in the LCR creation and deployment. The PRSB CIS is one component in the process. The scope of this clinical safety case includes the PRSB CIS component only.


Shared Care Record Creation diagram showing GP, Hospital, Social care systems feeding into Data normalisation and de-duplication, then Local Care Record, Core Information Standard, Other Data Views e.g. Care Homes View, Logical Data Model, GUI Rendered Views, and End-user.&lt;/img&gt;

<p>///mermaid
graph TD
    %% Define nodes with Font Awesome icons for primary components
    Hospital[Hospital <br> :fa-solid:fa-computer: +]
    SocialCare[Social care <br> :fa-solid:fa-computer:]
    AboutMe[About me <br> :fa-solid:fa-computer:]
    
    DataNorm{{Data normalisation <br> and de-duplication <br> :fa-solid:fa-circle-check:}}
    
    LCR(Local Care Record <br> :fa-solid:fa-handshake-simple:)
    
    %% Using triple quotes for multi-line content to avoid parsing conflicts
    CIS["Core Information Standard <br>
    -&gt; Person demographics
    -&gt; GP practice
    -&gt; About me
    -&gt; Care and support plan
    -&gt; Contingency plan(s)
    -&gt; Additional supporting plan(s)"]
    
    ODV["Other Data Views e.g.<br>Care Homes View <br>
    -&gt; Person demographics
    -&gt; GP practice
    -&gt; About me
    -&gt; Care and support plan
    -&gt; Contingency plan(s)
    -&gt; Additional supporting plan(s)"]
    
    LDM(Logical Data Model)
    
    GUI[GUI Rendered Views <br> :fa-solid:fa-circle-info: <br> :fa-solid:fa-computer:]
    
    EndUser[End-user <br> :fa-solid:fa-user-nurse: <br> :fa-solid:fa-computer:]

    
    %% Connections and Flow
    Hospital --&gt; DataNorm
    SocialCare --&gt; DataNorm
    AboutMe --&gt; DataNorm
    
    DataNorm --&gt; LCR
    DataNorm --&gt; LDM
    
    LCR --&gt; CIS
    LCR --&gt; ODV
    
    LDM --&gt; LCR
    
    CIS --&gt; GUI
    ODV --&gt; GUI
    
    GUI --&gt; EndUser
    
    %% Add subgraph for visual grouping of data providers
    subgraph Data Sources
        Hospital
        SocialCare
        AboutMe
    end
    
    %% Add subgraph for the core SCR components
    subgraph Shared Care Record Components
        DataNorm
        LCR
        CIS
        ODV
        LDM
    end
    
    %% Set graph direction from left to right as in the image
    direction LR
	</p>

Diagram A: Local shared care record creation

#### 3.2 Inclusions to Scope

The following are included in the clinical safety case:

*   The LCR CIS set of “Concept” sections (under which users can view the shared information);
*   The definitions of the sections and descriptions of the data to be stored and viewed under the section;
*   The data attributes of the sections.
*   Guidance on the sections to be included in the Care Homes view

#### 3.3 Exclusions to Scope

The following are out of scope of this clinical safety case:

*   The source of the data and structure of data being shared;
*   The normalisation and de-duplication process;
*   The logical data model and database design; The graphical user interface (GUI) and the way in which the data is rendered in that view.

#### 3.4 Use

Initially the LCR is intended to be a read only interface. Writing to the record has not been included in this clinical safety case.

### 4 Clinical Risk Management System

The NHS Digital Clinical Safety Group (CSG) operates a full Clinical Safety Management System (CSMS) that encompasses integration with health organisations and professional bodies. The CSMS considers the integration with the Information Standards Board (ISB) and the process in which professional standards are developed in the CSMS framework. The essential structures of a CSMS have been implemented in this project through the consultation with healthcare professionals, patients, informaticians and clinical system suppliers, during the development of the Digital Social Care Information products. Governance structures, project methodology and stakeholder engagement are described in the Digital Social Care Information final report [Ref.5]. The PRSB remit, organisational structure, roles and responsibilities of key personnel are fully described on the PRSB website at: www.theprsb.org.

It should be noted that this clinical safety report is necessarily limited in its scope because it is neither directly related to software development nor to deployment. Suppliers developing software to implement these standards will therefore still be expected to fully apply DCB0129. Organisations involved in the deployment of such software will still be expected to fully apply DCB0160. [Ref.6].

The role of a Clinical Safety Officer (CSO) was to review the Clinical Safety Case using his/her clinical experience to judge the appropriateness and effectiveness of the risk management strategies and mitigating actions. The CSO monitored the execution of the Clinical Safety Case and ensured that clinical safety obligations were discharged.

The clinical safety case documentation is handed over to NHS Digital Clinical Safety Group. The clinical safety case report is published on the PRSB website. Updates to the clinical safety case is the responsibility of PRSB.

### 5 Hazard Identification and Clinical Risk Analysis

Activities that have been carried out to clarify and address the potential risks to patients include:

#### 5.1 Original CIS Consultation

*   Safety issues identified by clinical informaticians and advisors and patient advisors participating in hazard workshop on 31<sup>st</sup> May 2019.
*   Safety issues identified by clinical informaticians and clinical and patient advisors participating in clinical safety meeting on 22<sup>nd</sup> May 2019.
*   Safety issues identified by clinical informaticians and clinical and professional advisors participating in project clinical experts’ meetings held on 1<sup>st</sup> May and 16<sup>th</sup> May 2019.
*   Potential clinical safety issues identified by stakeholder participants during consultation survey (n=1000) and other consultations undertaken during the development of the CIS.
*   Production of a hazard log for the project.
*   Review of the hazard log and any associated safety risks.
*   Review of mitigation of risks.
*   Clinical safety mitigation and confirmation of risks to be passed to implementation / maintenance stages identified.
*   Drafting of safety case (approaches to mitigating the risks identified).
*   Final draft of hazard log (CIS original) and clinical safety report.
*   NHS Digital clinical safety case review.

#### 5.2 Digital Social Care Information consultation (Updated CIS):

*   Safety issues identified by clinical informaticians, clinical and professional advisors and patient advisors participating in hazard workshops on 8<sup>th</sup> July and 15<sup>th</sup> July 2020
*   Safety issues identified by clinical informaticians, clinical and professional advisors and patient advisors participating in clinical safety meeting on 19<sup>th</sup> August 2020.
*   Potential clinical safety issues identified by stakeholder participants during consultation surveys (n=763) and other consultations undertaken during the development of the Digital Social Care Information products.
*   Updates to original CIS hazard log for the project.
*   Review of the updated CIS hazard log and any associated safety risks.
*   Review of mitigation of risks.
*   Clinical safety mitigation and confirmation of residual risks to be passed to implementation / maintenance stages identified.
*   Drafting of safety case (approaches to mitigating the risks identified).
*   Final draft of hazard log and clinical safety report.
*   NHS Digital clinical safety case review of updated CIS.

### 6 Clinical Risk Evaluation and Clinical Risk Control

#### 6.1 Patient safety risk assessment approach

The patient safety risk assessment approach was as follows:

*   What could go wrong, and how often? (hazard and likelihood) [See Appendix A for risk matrix]
*   Possible main causes
*   Most likely consequences / potential clinical impact (i.e., for patient safety)
*   Mitigations (and recommendations to improve patient safety) leading to a reduced residual risk
*   Clarification regarding actions required and risk transferred to implementers.

#### 6.2 Hazard log composition

The Hazard log is contained in an Excel Spreadsheet and contains the following sections:

*   Hazard number
*   Hazard name
*   Hazard description
*   Potential clinical impact
*   Possible causes
*   Existing controls
*   Unmodified risk rating including likelihood and consequence
*   Proposed mitigations (In design, testing, training or business process controls)
*   Modified risk ratings (taking into account proposed mitigations)
* Summary of actions / notes
* Owner of the residual risk
* Hazard status

#### 6.3 Risk assessment methodology

Risk assessment was undertaken using the risk matrix and scoring tool shown in Appendix A. Note that consequences were interpreted in terms of impact on outcomes including the person’s experience of care.

When assessing the risk severity and likelihood, the highest combined value was used. However, where that can be arrived at by different values for severity and likelihood, such as major but very low versus considerable and low, generally the lower severity has been used. It is recognized that very occasionally the absence of information in the record might lead to death of a patient, but that the likelihood is very low indeed, especially given that this record is additional to existing systems.

#### 6.4 Hazard workshops and clinical safety case meetings

Potential clinical safety risks were identified throughout the development of the CIS and the updates conducted as part of the Digital Social Care Information project. These risks were specifically explored at several advisory group meetings.

##### 6.4.1 Original consultation:

A hazard workshop was convened to explore all the risks to patient safety and develop the original CIS hazard log. Details of these meetings are described below:

<table>
  <tbody><tr>
    <td colspan="3" style="background-color: #0077cc; color: white;">Hazard Workshop 1</td>
  </tr>
  <tr>
    <td>Date</td>
    <td>31.05.2019</td>
    <td>Time</td>
    <td>10:00 – 15:00</td>
  </tr>
  <tr>
    <td>Location</td>
    <td colspan="3">Face to face workshop at PRSB offices</td>
  </tr>
  <tr>
    <td colspan="4"><strong>Attendees:</strong></td>
  </tr>
  <tr>
    <td></td>
    <td><strong>Name</strong></td>
    <td><strong>Role</strong></td>
  </tr>
  <tr>
    <td>Chair</td>
    <td>John Robinson</td>
    <td>Clinical Safety Officer / GP/ Clinical informatician</td>
  </tr>
  <tr>
    <td></td>
    <td>Maggie Lay</td>
    <td>Integrated Care Lead/CSO/ CNIO/ Community nurse</td>
  </tr>
  <tr>
    <td></td>
    <td>Matt Butler</td>
    <td>Clinical informatician/ Mental health nurse</td>
  </tr>
  <tr>
    <td></td>
    <td>Ron Newall</td>
    <td>PRSB patient advisor and subject matter expert</td>
  </tr>
  <tr>
    <td></td>
    <td>Annette Gilmore</td>
    <td>Clinical informatician/ Acute care nurse</td>
  </tr>
</tbody></table>

**Clinical safety case Meeting**

| Date | 22.05.2019 | Time | 9:30 – 10:30 |
|---|---|---|---|
| **Location** | Meeting by teleconference |

**Attendees:**

| Name | Role |
|---|---|
| Chair | John Robinson | Clinical Safety Officer (CSO) / GP Clinical informatician |
|  | Laura Fulcher | PRSB Patient Advisor and Assurance Committee member |
|  | Maggie Lay | Integrated Care Lead/CSO/ CNIO/ Community nurse |
|  | Matt Butler | Clinical informatician/Mental health nurse |
|  | Prof Iain Carpenter | Clinical informatician/CSO/Consultant Geriatrician |
|  | Annette Gilmore | Clinical informatician/ Acute nurse |

Potential clinical safety risks and hazards were explored at the LCR project Expert review group meetings on the following dates: 1<sup>st</sup> May 2019; 9am to 1.30pm and 16 May 2019; 9am to 12.30pm

**Expert review group (attendees)**

| Expert Group Role | Name |
|---|---|
| Consultant Psychiatrist &amp; CCIO &amp; clinical informatician | James Reed |
| Emergency care physician | Tony Shannon |
| Geriatrician &amp; clinical informatician | Iain Carpenter |
| GP &amp; clinical informatician | Ian McNicoll |
| GP &amp; clinical informatician | Nick Booth |
| General Practitioner &amp; clinical informatician | John Robinson |
| General Practitioner &amp; clinical informatician | Phil Koczan |
| Mental Health Nurse &amp; clinical informatician  | Matt Butler  |
| North Yorkshire county council, LCR (social care) | Neil Bartram  |
| Physiotherapist (AHP)  | Euan McComiskie |
| Renal physician, CCIO &amp; clinical informatician | Afzal Chaudhry  |
| Surgeon &amp; CCIO | Dermott O’ Riordan |
---

##### 6.4.2 **Digital Social Care Information consultation:**

A hazard workshop (two sessions) was convened to explore all the risks to patient safety and develop updated CIS hazard log. Details of these meetings are described below:

**Hazard Workshop 2**

| Date | 08.07.2020 | Time | 12:00 – 13:30 |
|---|---|---|---|
| Location | Conducted via teleconference call following COVID-19 pandemic |  |  |

**Attendees:**

|  | Name | Role |
|---|---|---|
|Chair| Dr John Robinson | PRSB Clinical Advisor for Digital Social Care Information Project, PRSB Clinical Safety Officer, Retired General Practitioner and Clinical Informatician |
|  | Annette Gilmore | Clinical informatician (PRSB) / Acute care nurse |
|  | Beverley Latania | PRSB Social Care Advisor for Digital Social Care Information Project, Head of Mental Health Social Work – Islington Council |
|  | Helene Feger | PRSB, Director of Strategy, Communications and Engagement |
|  | James Critchlow | Associate Medical Researcher (PRSB) |
|  | Katie Thorn | PRSB Social Care Advisor for Digital Social Care Information Project, Digital Engagement Manager – Registered Nursing Home Association, Project Lead – Digital Social Care |
|  | Martin Orton | PRSB, Director of Delivery &amp; Development |
|  | Samantha Goncalves | PRSB Citizen Lead for Digital Social Care Information Project |
|  | Sarah Jackson | PRSB Project Manager |

**Hazard Workshop 3**

| Date | 15.07.2020 | Time | 12:00 – 13:00 |
|---|---|---|---|
| Location | Conducted via teleconference call following COVID-19 pandemic |  |  |

**Attendees:**

| Name | Role |
|---|---|
|Chair| Dr John Robinson | PRSB Clinical Advisor for Digital Social Care Information Project, PRSB Clinical Safety Officer, Retired General Practitioner and Clinical Informatician |
|  | Professor Adam Gordon | PRSB Clinical Advisor, Clinical Associate Professor of Medicine of Older People – University of Nottingham, Consultant Geriatrician – Derby Teaching Hospitals NHS Trust, Vice President for Academic Affairs – British Geriatric Society |
|  | Annette Gilmore | Clinical informatician (PRSB) / Acute care nurse |
|  | Beverley Latania | PRSB Social Care Advisor for Digital Social Care Information Project, Head of Mental Health Social Work – Islington Council |
|  | Helene Feger | PRSB, Director of Strategy, Communications and Engagement |
|  | James Critchlow | Associate Medical Researcher (PRSB) |
|  | Katie Thorn | PRSB Social Care Advisor for Digital Social Care Information Project, Digital Engagement Manager – Registered Nursing Home Association, Project Lead – Digital Social Care |
|  | Martin Orton | PRSB, Director of Delivery &amp; Development |
|  | Samantha Goncalves | PRSB Citizen Lead for Digital Social Care Information Project|
|  | Sarah Jackson | PRSB Project Manager |

**Clinical Safety Meeting**

| Date | 19.08.2020 | Time | 12:00 – 13:00 |
|---|---|---|---|
| Location | Conducted via teleconference call following COVID-19 pandemic |  |  |

**Attendees:**

| Name | Role |
|---|---|
| Dr John Robinson | PRSB Clinical Advisor for Digital Social Care Information Project, PRSB Clinical Safety Officer, Retired General Practitioner and Clinical Informatician |
| Professor Adam Gordon | PRSB Clinical Advisor, Clinical Associate Professor of Medicine of Older People – University of Nottingham, Consultant Geriatrician – Derby Teaching Hospitals NHS Trust, Vice President for Academic Affairs – British Geriatric Society |
| Beverley Latania | PRSB Social Care Advisor for Digital Social Care Information Project, Head of Mental Health Social Work – Islington Council |
| Helene Feger | PRSB, Director of Strategy, Communications and Engagement |
| James Critchlow | Associate Medical Researcher (PRSB) |
| Katie Thorn | PRSB Social Care Advisor for Digital Social Care Information Project, Digital Engagement Manager – Registered Nursing Home Association, Project Lead – Digital Social Care |
| Martin Orton | PRSB, Director of Delivery &amp; Development |
| Samantha Goncalves | PRSB Citizen Lead for Digital Social Care Information Project |
| Sarah Jackson | PRSB Project Manager |

### 7 Hazard log

The full hazard log is attached as a separate Excel document. The Hazard table lists the hazards identified together with summary information about each hazard, the mitigations identified and the residual risk score. We have flagged some risks relating to implementation in this report but expect that further mitigations will be identified as clinical risk assessments and safety cases are developed by vendors and sites during the implementation.

Include URL to Hazard log (in final version)

### 8 Hazards

There were 37 hazards identified that are listed in the hazard log.

### 9 Residual Hazard Risk Assessment

The updated hazard log consists of 37 hazards. Six new hazards were identified in the Digital Social Care information consultation. Additional elements were added to existing hazards, during this consultation as well. The majority of which did not alter the risk of the hazard. Where the initial risk was raised following the Digital Social Care Information consultation, the hazard is discussed below. A further additional hazard was added on review of the changes to the sex and gender data items and one hazard was modified.

There are 15 hazards with an initial risk of 3 or more. After controls and mitigations there remain six hazards with a residual risk of 3, which is undesirable. Hazard 16 was originally rated at level 4 but was subsequently reviewed following changes to the sex and gender data items and was assessed at level 3, mitigated to level 2. Also hazard 30 (level 3), which has been raised by the inclusion of social care data and can only be mitigated further at implementation.

All the residual risks in the Hazard log will be transferred to those incorporating the CIS and associated products into an EHR. Action should be seriously considered for all level 3 risks. Consideration should also be given to further reducing those at level 2 where it is possible to do so. The residual risks at level 3 are as follows:

**Risk Level 3**

**Hazard 8: The context or provenance of the information is lost, unknown or misunderstood**

It is recognised that the Core Information Standard is a set of sections under which information is displayed, but that this view does not allow all the useful context and provenance of the information to be seen. Examples may include:

*   This Core Information Standard model shows data from all sources under defined sections. The elements of the items under each section do not take into account the full amount of contextual data available. Contextual data may be used to view a data item as part of a problem or part of an encounter for example and can therefore help to understand the provenance and context in which it was entered.
*   Losing the link to a source document. For example; Elements from the PRSB eDischarge or local authority assessment.
*   Summary separated under different sections in the CIS and links to whole document lost.
*   Inability to distinguish clinical information shared by care home or local authority with that entered by clinicians
*   Healthcare provider is unsure of the provenance of the CPR decision information and is thus unable to be sure of actions to take regarding CPR.
*   It is unclear whether clinical information was derived from a professional source e.g. consultant physician or from a patient history
*   Clinician unclear about the purpose of About Me (*NB*: The About Me section has been updated in the latest version of the CIS as part of the PRSB Digital Social Care Information project)

The mitigation for this is the development of other views of the information being made available to the end user, ensuring that the context and provenance of the data is retained. As well as ensuring users of systems understand the source of the data and the importance of context to support judging the validity of an entry - especially understanding the structure and purpose of the About Me section.

**Hazard 11: Significant problems, diagnoses, conditions or procedures are not visible to healthcare user**

The sections containing Problems, Diagnoses, Conditions and Procedures is recognised to be an issue because of the semantics of language between different professional groups (i.e What is regarded as a problem) and the structure of the data held in different clinical systems. In addition, there is a risk of an overload of data obscuring the information required. It is well known that GP problem lists are often extensive and are not curated.

**Hazard 24: Failure to adopt CIS**

The development of the standard needs to be supported in adoption by promotion by NHS Digital, NHS England, PRSB and stakeholder organisations who have provided endorsement for the standard, including bodies representing local authorities and care homes. The heterogeneity in the data items recorded by different local authorities and care homes will increase this risk as certain centres may consider the scope of the standards as limited or difficult to implement. Failure to adopt it risks multiple different models being adopted, resulting in lack of interoperability and lack of user familiarity. Leading to loss of benefit and potential patient harm.

**Hazard 25: CIS used out of scope**

The clinical safety case is based on the CIS being used in scope. Failure to stick to the scope defined and use it for purposes beyond its intended purpose would pose a risk to patient safety. It should be implemented following the implementation guidelines.

It should be noted that it has been assessed as a “Read only” record system. A read only shared record system can only reflect information supplied by other systems and should not be regarded as the single source of truth.

**Hazard 30: Patient data error in interconnecting systems (Out of scope for Middleware Manufacturer noted here for Health Organisation only)**

The addition of data from Local Authorities has increased this risk to a level 3 and it remains at this level of residual risk.

Identifying demographics information should be obtained from established sources such as the Patient Administration System [PAS] or national Patient Demographic Service [PDS]) – however, it is recognised that data may be missing, incorrect, incomplete, out of date or corrupt; creating a clinical safety risk. Examples of possible causes may include:

*   Failure to identify duplicates of patients in local master patient Index.
*   Missing, incorrect, incomplete, out of date or corrupt local data resulting in inability to identify patient or misidentification.
*   Inconsistency of patient record identifiers between interconnecting systems.
*   Data incorrectly entered into national records e.g. PDS multiple active (non end-dated) address records exist.
*   Data does not match demographics. NB Systems completed manually.

In addition, Local Authorities have identified significant issues in NHS number tracing and this may cause any of the above. *NB*: The use of NHS number or equivalent is a legal requirement for local authorities unless they are unable to reasonably comply – The Health and Social Care (Safety and Quality Act) 2015. Mitigations are required at the implementation stage.

**Hazard 31: Data in legal section misunderstood or missing.**

This hazard was introduced because of the introduction of legal data from local authorities, although it applies to all data in the legal section. The data may refer to the presence of a legal document such as an advance directive, but the actual document may not be accessible. The record might be out of date or misinterpreted. As this is a UK wide standard there was concern that there are differences in the legal requirements across the different UK countries.

This can be mitigated by ensuring that the original documents are accessible, and this is made clear in the implementation guidance. We are aware that work is going on nationally to create a single repository for documents. Training users to understand what is in this section and how it should be interpreted is also important.


**Risk Level 2**

The Hazards 2 and 3 described below are where initial risk has increased to level three following the Digital Social Care Information Consultation, but controls and mitigations have reduced the residual risk to level 2.

**Hazard 2: Data missing/ incomplete data**

This risk increased because of the addition of Local Authority data. It is important to ensure the design of shared care record system can handle the local authority data model (out of scope) - (LA information).

**Hazard 3: Incorrect data or data is misinterpreted, or data is represented incorrectly.**

The inclusion of data from Local authorities and in the About Me section has increased this risk. It is mitigated by ensuring that users understand the issues around different semantic use of terms in different environments and are clear about the provenance and context of data being displayed.

**Hazards 33 and 34 are new and were identified following the Digital Social Care Information consultation and a review of the existing safety case for the CIS. They have an initial risk of three but are mitigated to two.**

**Hazard 33: Inappropriate role-based access control (RBAC) implementation**

Either an appropriate end-user does not see information that they need to see, or an end-user has access to information that they should not see due to inappropriately allocated RBAC.

The initial design of the Care Homes View of the CIS included two different RBAC view proposals one for clinical care staff and one for others. These were both filtered views of the data. Following consultation these have been removed from the standard. PRSB recommends that all data must be viewable for appropriate users and should not be filtered unnecessarily, as this may lead to data not being visible. It was noted that Care homes very often do not have clinically qualified staff.

More generally this hazard increases with the rise in the number of organisations having access to the CIS data. This can be mitigated by ensuring that those administering RBAC privileges have adequate training and local policy is well communicated. As well as ensuring that there is adequate granularity in the RBAC roles. It is recognised that with the rising complexity of the data from multiple sources, the functionality of RBAC is increasingly challenged in managing confidentiality.


**Hazard 34: The care home view of the CIS record does not include some important information**

The initial design of the Care Homes View of the CIS included two different RBAC view proposals, which were both filtered views of the data. Following consultation these have been removed from the standard. Therefore, this hazard has been controlled.

**Hazard 37:**
Hazard 37 was added following changes to the sex and gender data items to capture the risk of patients being called or not called for sex specific screening if the sex at birth is absent or incorrect. This was assessed at level 3 but with mitigation, adoption of the standard, reduced to level 2.

### 10 Training

Training of the end users of the local care record is offered as a mitigation for many of the hazards identified. This should be considered, when developing these systems and be provided by the system suppliers or the deployers of such systems. Users should understand the limitations of any system and how to use them to best understand the context and provenance of data. They should also understand that they are not designed to replace consulting the patient, which is an important mitigation in any clinical system. Training should facilitate good communication practices. Implementation guidance is provided as part of the CIS and PRSB provide a support service where implementors can get advice about implementing the CIS.
**NB:** Additional implementation guidance is available on the PRSB website relating to the following Digital Social Care Information products that form part of the CIS:

*   [About Me](#)
*   [Care Homes View (of Shared Health and Care Records)](#)
*   [Local Authority Information (For Shared Health and Care Records)](#)

### 11 Test Issues

As the Core Information Model has as yet not been implemented in any systems, it has not been possible to test the model in vivo. It is therefore dependent on those implementing the standards doing full end to end clinical safety testing and for them to provide evidence of successful testing as part of their own clinical risk management activities.

### 12 Summary Safety Statement

Thirty-seven potential hazards were identified. All hazards were identified through the consultation processes carried out to assure the PRSB Core Information Standard or the Digital Social Care Information products that form part of the updated CIS; developed to underpin and support the implementation and use of LCRs. The original and subsequent consultation processes are described in detail in the Core Information Standard and Digital Social Care Information final project reports respectively and section 6 of this document. The consultations included patient and carer representatives as well as professionals from Royal Colleges, specialist societies, allied health professions, health informatics professionals, pharmacists, local authority and care home representatives and vendors.

During the consultations, hazards were identified, reviewed and mitigations/actions considered. Nevertheless, some risks are inherent in the standard, but most have been:

(A) mitigated by the development of the standard
(B) or the residual risk has been transferred (with guidance) to the implementers.

It is worth drawing attention to two groups of hazards. Issues with the data generally and issues with specific sections of the data. In terms of the first of these, data may be absent, incorrect, conflicting, or present but not found. These hazards are all dependent on the design of the shared record system.

Allergies, Medications, Problems and Diagnoses, Care plans and Alerts are all sections where it was felt to be worth highlighting the hazards specifically. In some cases, further work needs to be done to define the content or ensure the different way in which the data is represented in different systems is fully understood and correctly mapped to the CIS. For instance, Primary Care systems do not specifically define a diagnosis in their information models and Diagnoses tend to be used rather differently in primary and secondary care. The alerts section has been designed to hold a limited range of specific alerts and exactly how it is designed to work in particular systems will need to be conveyed in training.

The section Pregnancy status is designed to alert users to whether a patient is currently pregnant. It seems unlikely that this information can be reliably imported from a single system and so, is likely, to be a calculated field. This is unique in this model and may be defined as a medical device, for which separate safety assessment and registration will be required. System manufacturers will need to consider this.

The hazard log (a separate document) provides guidance for system developers and implementers. It is important that this guidance in relation to those hazards, regarded as system issues, become requirements for implementation.

Most hazards are rated as a risk acceptability level of 2. This level is tolerable where cost of further reduction outweighs benefits gained. But should nevertheless be considered by those deploying the standard. The six with a residual risk at level 3 have been described in section 9. The mitigations for the level 3 risks are outside the control of PRSB and these risks are therefore transferred to the system developers and deployers of this standard. Level 3 risks are defined as “An Undesirable level of risk. Attempts should be made to eliminate the hazard or implement control measures to reduce risk to an acceptable level. Shall only be acceptable when further risk reduction is impractical”.

### 13 Document Control and Post Standards Approval Maintenance

Future governance of the development and maintenance of the Core Information Standard is the responsibility of the PRSB.

### 14 DCB 0129 Compliance Matrix

The table below summarises the compliance status of this safety case for the PRSB Core Information Standard

<table>
<thead>
<tr>
<th>Requirement</th>
<th>Compliant (Y/N)?</th>
<th>Comments</th>
</tr>
</thead>
<tbody>
<tr>
<td>2. General Requirements and Conformance Criteria for Clinical Risk Management</td>
<td>Y</td>
<td>See section 4</td>
</tr>
<tr>
<td>2.1 Clinical risk management process</td>
<td>Y</td>
<td>See section 4</td>
</tr>
<tr>
<td>2.2 Top Management responsibilities</td>
<td>Y</td>
<td>See section 4</td>
</tr>
<tr>
<td>2.3 Clinical Safety Officer</td>
<td>Y</td>
<td>See section 4</td>
</tr>
<tr>
<td>2.4 Competencies of personnel</td>
<td>Y</td>
<td>See section 4 &amp; 6</td>
</tr>
<tr>
<td>3.1 Clinical risk management file</td>
<td>Y</td>
<td>This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance.</td>
</tr>
<tr>
<td>3.2 Clinical risk management plan</td>
<td>Y</td>
<td>See section 5 &amp; 6</td>
</tr>
<tr>
<td>3.3 Hazard log</td>
<td>Y</td>
<td>See section 7</td>
</tr>
<tr>
<td>3.4 Clinical safety case</td>
<td>Y</td>
<td>This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance.</td>
</tr>
<tr>
<td>4 Clinical risk analysis</td>
<td>Y</td>
<td>See section 5</td>
</tr>
<tr>
<td>4.1 Clinical risk analysis process</td>
<td>Y</td>
<td>See Section 6</td>
</tr>
<tr>
<td>4.2 Health IT System scope definition</td>
<td>Y</td>
<td>See section 2</td>
</tr>
<tr>
<td>4.3 Identification of hazards to patients</td>
<td>Y</td>
<td>See section 5</td>
</tr>
</tbody>
</table>

| 4.4 Estimation of the clinical risk(s) | Y | See section 6 |
|---|---|---|
| 5 Clinical risk evaluation | Y | See section 6/7 |
| 6 Clinical risk control | Y | See section 6/7 |
| 6.1 Clinical risk control option analysis | Y | See section 6/7 |
| 6.2 Clinical risk/benefit analysis | Y | See section 6/7 |
| 6.3 Implementation of clinical risk control measures | Y | See section 6/7 |
| 7.1 Delivery | Y | This document in its entirety, including supporting evidence, the CIS and Digital Social Care Information products and implementation guidance. |
| 7.2 Post-deployment monitoring | N | Not required for a professional standard. |
| 7.3 Modification | Y | See section 13 |

### 15 Appendix A – Risk Matrix

<table>
<thead>
<tr>
<th rowspan="6">Likelihood</th>
<th>Very High</th>
<th>3</th>
<th>4</th>
<th>4</th>
<th>5</th>
<th>5</th>
</tr>
<tr>
<th>High</th>
<th>2</th>
<th>3</th>
<th>3</th>
<th>4</th>
<th>5</th>
</tr>
<tr>
<th>Medium</th>
<th>2</th>
<th>2</th>
<th>3</th>
<th>3</th>
<th>4</th>
</tr>
<tr>
<th>Low</th>
<th>1</th>
<th>2</th>
<th>2</th>
<th>3</th>
<th>4</th>
</tr>
<tr>
<th>Very low</th>
<th>1</th>
<th>1</th>
<th>2</th>
<th>2</th>
<th>3</th>
</tr>
<tr>
<th></th>
<th>Minor</th>
<th>Significant</th>
<th>Considerable</th>
<th>Major</th>
<th>Catastrophic</th>
</tr>
</thead>
<tbody>
<tr>
<td colspan="6"><strong>Consequence</strong></td>
</tr>
</tbody>
</table>

<table>
<thead>
<tr>
<th>Likelihood Category</th>
<th>Interpretation</th>
</tr>
</thead>
<tbody>
<tr>
<td>Very high</td>
<td>Certain or almost certain; highly likely to occur</td>
</tr>
<tr>
<td>High</td>
<td>Not certain but very possible; reasonably expected to occur in the majority of cases</td>
</tr>
<tr>
<td>Medium</td>
<td>Possible</td>
</tr>
  <tr>
    <td>Low</td>
    <td>Could occur but in the great majority of occasions will not</td>
  </tr>
  <tr>
    <td>Very low</td>
    <td>Negligible or nearly negligible possibility of occurring</td>
  </tr>
</tbody></table>

<table>
  <thead>
    <tr>
      <th rowspan="2">Consequence Category</th>
      <th colspan="2">Interpretation</th>
    </tr>
    <tr>
      <th>Consequence</th>
      <th>Patients Affected</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td rowspan="2">Catastrophic</td>
      <td>Death</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td>Permanent life-changing incapacity and any condition for which the prognosis is death or permanent life-changing incapacity; severe injury or severe incapacity from which recovery is not expected in the short term</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td rowspan="4">Major</td>
      <td>Death</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Permanent life-changing incapacity and any condition for which the prognosis is death or permanent life-changing incapacity; severe injury or severe incapacity from which recovery is not expected in the short term</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Severe injury or severe incapacity from which recovery is expected in the short term</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td>Severe psychological trauma</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td rowspan="4">Considerable</td>
      <td>Severe injury or severe incapacity from which recovery is expected in the short term</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Severe psychological trauma</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Minor injury or injuries from which recovery is not expected in the short term.</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td>Significant psychological trauma</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td rowspan="4">Significant</td>
      <td>Minor injury or injuries from which recovery is not expected in the short term</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Significant psychological trauma</td>
      <td>Single</td>
    </tr>
    <tr>
      <td>Minor injury from which recovery is expected in the short term</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td>Minor psychological upset; inconvenience</td>
      <td>Multiple</td>
    </tr>
    <tr>
      <td>Minor</td>
      <td>Minor injury from which recovery is expected in the short term; minor psychological upset; inconvenience; any negligible consequence</td>
      <td>Single</td>
    </tr>
  </tbody>
</table>

<table>
  <thead>
    <tr>
      <th></th>
      <th>Risk Acceptability</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td style="background-color: orange;">5</td>
      <td>Unacceptable level of risk. Mandatory elimination or control to reduce risk to an acceptable level.</td>
    </tr>
    <tr>
      <td style="background-color: lightcoral;">4</td>
      <td>Unacceptable level of risk. Mandatory elimination or control to reduce risk to an acceptable level</td>
    </tr>
    <tr>
      <td style="background-color: #f3e5cd;">3</td>
      <td>Undesirable level of risk. Attempts should be made to eliminate or control to reduce risk to an acceptable level. Shall only be acceptable when further risk reduction is impractical.</td>
    </tr>
    <tr>
    <td style="background-color: yellow;">2</td>
    <td>Tolerable where cost of further reduction outweighs benefits gained.</td>
  </tr>
  <tr>
    <td style="background-color: lightgreen;">1</td>
    <td>Acceptable, no further action required</td>
  </tr>
</tbody></table>

## Survey Results and Analysis
July 2019

### 1 Introduction

This is an appendix to the final report for the core information standard.

The online survey was one part of the overall consultation approach in the development of the core
information standard and came after detailed work on specific topic areas and a national workshop on the
entire standard. The survey ran from 1 April 2019 to 1 May 2019. Feedback from the consultation prior to
the survey (webinars, citizen's focus group and a national workshop) was used in the design of the survey.
The survey was aimed at frontline care professionals, people who use services and their carers and
systems suppliers. This report includes the results and analysis of the survey. The findings from the survey
were used to inform the development of core information standard. In total 1010 individuals participated in
the survey.

The survey was sent to 1325 individuals, including advisory board representatives and key contacts to
distribute across their networks. Additionally, it was distributed to the 708 subscribers of the PRSB
newsletter, the 413 stakeholders who we identified as possible attendees for the webinars and workshops,
and past workshop attendees. The survey was featured in a number of publications such as the NHS
Improvement provider bulletin, Digital Health Intelligence, NHS England CCG bulletin, NHSE Informed and
NHSE Intouch, on professional platforms such as Ryver and with other groups including the Pharmacy
Digital Forum and Scottish Children's Cancer and Leukaemia Group members. The survey was also
tweeted, with 325 re-tweets and more than 81,000 impressions.

The survey was also publicised through the chief social and adult and children's social care directors, the
care provider alliance representing up to 2 million working in domiciliary care and care homes, system
suppliers, LHCR teams and patient groups such as the Wellcome Trust, Understanding Patient Data,
National Voices representing 140 charities and the Patient Information Forum representing 300+ charities.

The first two questions of the survey identified respondents' roles and the settings in which they work; these
are shown below:

##### 1.1 Q1. Please tell us which of the following best matches your role. Please tick the
appropriate job description and add more detail in the box provided below about your
specific role.

(Answered: 1,010, Skipped: 0)

<p>///mermaid
xychart horizontal
    title "Count of Responses by Professional Role (Descending Order)"
    x-axis ["NHS administrati...", "Patient or service user", "Nurse", "Allied health professional", "Secondary care doctor", "Social care professional", "General practitioner", "Health/care system vendo...", "Mental health/learning...", "Pharmacist", "Carer", "Midwife"]
    y-axis "Count"
    bar [207, 189, 117, 107, 82, 82, 59, 43, 42, 42, 34, 6]
</p>


| ANSWER CHOICES                               | RESPONSES |       |
| :------------------------------------------- | :-------- | :---- |
| General practitioner                         | 5.84%     | 59    |
| Secondary care doctor                        | 8.12%     | 82    |
| Nurse                                        | 11.58%    | 117   |
| Midwife                                      | 0.59%     | 6     |
| Mental health/ learning disability professional | 4.16%     | 42    |
| Social care professional                     | 8.12%     | 82    |
| Allied health professional                   | 10.59%    | 107   |
| Pharmacist                                   | 4.16%     | 42    |
| Health/care system vendor or developer       | 4.26%     | 43    |
| NHS administration/ management               | 20.50%    | 207   |
| Patient or service user                      | 18.71%    | 189   |
| Carer                                        | 3.37%     | 34    |
| TOTAL                                        |           | 1,010 |

##### 1.2 Q2. Please describe the setting in which you work.

Answered: 1,010 Skipped: 0

<p>///mermaid
pie
    title Distribution of Responses by Care Setting
    "Other, please specify" : 261
    "Not applicable (Patient/Carer)" : 180
    "Acute hospital" : 169
    "Community care" : 150
    "Primary care" : 113
    "Local authority" : 71
    "Mental health/learning disability" : 37
    "In a person's home" : 17
    "Specialist centre of care" : 12
    "Residential care home" : 0
</p>


| ANSWER CHOICES                                                 | RESPONSES |       |
| :------------------------------------------------------------- | :-------- | :---- |
| Acute hospital                                                 | 16.73%    | 169   |
| Primary care                                                   | 11.19%    | 113   |
| Community care                                                 | 14.85%    | 150   |
| Mental health/ learning disability hospital                    | 3.66%     | 37    |
| In a person's home                                             | 1.68%     | 17    |
| Residential care home                                          | 0.00%     | 0     |
| Local authority                                                | 7.03%     | 71    |
| Specialist centre of care                                      | 1.19%     | 12    |
| Not applicable - I am a person who uses services or a carer | 17.82%    | 180   |
| Other, please specify                                          | 25.84%    | 261   |
| TOTAL                                                          |           | 1,010 |



### 2 Question analysis

##### 2.1 Introduction

Each question is shown in the following sections together with quantitative statistics and key themes that emerged from qualitative analysis on the comments (where available).

##### 2.2 Q3. Do you agree that sharing core information will bring these benefits?

Answered: 1,010 Skipped: 0

<p>///mermaid
xychart-beta
    title "Agreement on Benefits of Care Data"
    x-axis ["Improve quality", "Make care more efficient", "Lead to better integration", "Support people who access...", "Support better care planning"]
    y-axis "Percentage of Responses" 0 --&gt; 100
    
    bar "Strongly agree" [75, 72, 72, 55, 63]
    bar "Agree" [23, 25, 25, 29, 32]
    bar "Neither agree or disagree" [4, 5, 7, 18, 8]
    bar "Strongly disagree" [0, 1, 0, 3, 2]
	</p>


|                                                                 | STRONGLY AGREE | AGREE    | NEITHER AGREE OR DISAGREE | DISAGREE | STRONGLY DISAGREE | TOTAL | WEIGHTED AVERAGE |
| :-------------------------------------------------------------- | :------------- | :------- | :-------------------------- | :------- | :---------------- | :---- | :--------------- |
| Improve the quality and safety of care                          | 73.56%         | 21.88%   | 2.97%                     | 0.89%    | 0.69%             | 1,010 | 1.33             |
|                                                                 | 743            | 221      | 30                          | 9        | 7                 |       |                  |
| Make care more efficient                                        | 70.40%         | 23.37%   | 4.46%                     | 1.09%    | 0.69%             | 1,010 | 1.38             |
|                                                                 | 711            | 236      | 45                          | 11       | 7                 |       |                  |
| Lead to better integration between health and care services     | 70.69%         | 22.48%   | 5.05%                     | 1.09%    | 0.69%             | 1,010 | 1.39             |
|                                                                 | 714            | 227      | 51                          | 11       | 7                 |       |                  |
| Support people who access services to take more control and manage their own care | 52.87%         | 27.13%   | 16.34%                    | 2.48%    | 1.19%             | 1,010 | 1.72             |
|                                                                 | 534            | 274      | 165                         | 25       | 12                |       |                  |
| Support better care planning and research                       | 61.49%         | 29.41%   | 6.83%                     | 1.39%    | 0.89%             | 1,010 | 1.51             |
|                                                                 | 621            | 297      | 69                          | 14       | 9                 |       |                  |




- More than 90% or respondents think sharing core information would improve quality, safety, efficiency, integration and planning and research. More than 80% of respondents believe sharing core information will support people who access services to take more control and manage their own care.
- None of the doctors, nurses and social care professionals that took part in the survey expressed strong disagreement that sharing information would bring benefits.
- Allied health professionals were less sure of the benefits that sharing of core information would bring across the board with a small percentage strongly disagreeing that it would improve quality, safety, efficiency, integration, support for people and planning and research.
- Carers and pharmacists were more confident, none disagreed or strongly disagreed that sharing core information would have the various listed benefits.
- People who use services were least sure about the potential benefits, with 6.03 % disagreeing that sharing core information will be beneficial and 10.05% stating they were unsure that sharing would deliver the listed benefits.

##### 2.3 Q4. What concerns do you have about sharing core information?

Answered: 835 Skipped: 175

The concerns raised were grouped into themes. The chart below shows how often they were mentioned as a percentage of the total comments.

<p>///mermaid
xychart-beta horizontal
    title "Identified Barriers to Sharing Data (Descending Count)"
    x-axis ["Information governance", "Quality", "None", "Ownership/ consent", "comms&amp;understanding", "Systems &amp; methods", "Safety", "Info overload", "Culture", "Other"]
    y-axis "Response Count"
    bar [429, 154, 113, 113, 64, 64, 32, 29, 20, 1]
</p>

|                               |      |       |
| :---------------------------- | :--- | :---- |
| comms&amp;understanding         | 7.66%| 64    |
| Culture                       | 2.40%| 20    |
| Info overload                 | 3.47%| 29    |
| Information governance        | 51.38%| 429   |
| None                          | 13.53%| 113   |
| Other                         | 0.12%| 1     |
| Ownership/consent             | 13.53%| 113   |
| Quality                       | 18.44%| 154   |
| Safety                        | 3.83%| 32    |
| Systems &amp; methods             | 7.66%| 64    |

Key:

*   Comms and understanding – health literacy/ accessibility, public engagement – purpose/benefits of information sharing etc.
*   Culture – working practice, habits, clinician priorities, lack of change etc.
*   Info overload – too much to read given clinicians' heavy workload, important information buried etc.
*   Information governance – security, unauthorised access, GDPR, selling of data for profit, data leaks etc.
*   Ownership/consent – informed consent, patient held, patient granted access, information belongs to the patient
*   Quality – accuracy, inconsistencies, error, interpretation, out of date etc.
*   Safety – confidentiality, safeguarding, sensitive information
*   Systems and methods – IT, investment, lack of interoperability, system crashes, breadth of consultation, information model etc.


- Information governance was the most commonly cited concern overall and from each group of respondents when analysing their responses individually. There was fairly widespread concern regarding the sharing of data with wider industry for commercial exploitation, in particular health and holiday insurance companies and financial institutions. 36 respondents directly mentioned concerns about the sale of data. A small number of respondents commented that the rigours of GDPR and IG were a barrier to successfully sharing information (or were used as such). People who use services were the group that most frequently expressed concerns over information governance, with 61% of these respondents mentioning information governance concerns in their responses.
- The second most cited concern for GPs, pharmacists, vendors, people who use services and their carers was the quality of the information shared. How to identify the source, accuracy and timeliness of the data came up numerous times.
- The second biggest concern for nurses and midwives was systems and methods.
- The second biggest concern for social care professionals was ownership and consent.
- Doctors, midwives, social care and mental health professionals were interestingly less concerned with information overload.

A number of themes emerged from the qualitative analysis:

**Information Governance and Security**
A common theme was expressions of concern about:
- Information governance
- GDPR
- Cyber security including security breaches, unauthorised access, and data being hacked

**Data Quality**
Concerns were also raised about potential data quality issues including:
- How to identify the 'source' of data, how to determine the accuracy of data if held in different systems, and how updates would be refreshed
- How to ensure the timeliness of data and ensure it was the most up to date
- What if data is missing?
- Who is accountable for the accuracy of data?
- Who has entered the data?
- Individual's ability to point out inaccuracies and have them put right
- Concern was expressed that if patients were uploading data, e.g. blood pressure, how could its accuracy be assured?

**Data ownership**
A number of respondents were keen to emphasise that the individual, not the system, owned the data.

**Information access**
Several common themes emerged regarding information access:
- access should be on a role-based 'need to know' basis
- individuals should have the right to restrict access to information
- individuals should have access to all their information
- individuals should be informed about who has access to their information, and who has actually viewed it
- concerns were raised regarding accessibility to information for those with learning disabilities, dementia and older people
- the requirement to have safeguards to prevent healthcare professionals accessing patient information for whom they are not clinically responsible.
- Clarification of GDPR rules. What about in an emergency situation? Breaking the glass?

**Consent**
Several common themes emerged regarding consent to share information:

- How will consent to share data be approached? If patients have the right to restrict access to information, then consent needs to be considered flexibly and not as 'all or nothing'
- If patients do not trust or have confidence in the system, they may withhold consent, or withhold information, either of which could compromise safety
- Capacity for consent
- Potential for patients to be coerced into sharing data that they do not wish to
- Will multiple healthcare professionals all have to ask for explicit consent from a patient?

**Effective communications and engagement**
- A common theme was that there was a need for effective communications and engagement to gain public and patient confidence and trust in sharing information.

**'About me'**
- The comment was made that 'about me' should be the cornerstone, and that a person-centred approach should be adopted.
- Conversely, the comment was made that the approach should be to prioritise clinical benefits over patient access and self-management.

**Retaining clinical context**
- Several respondents identified that data without context may at best be meaningless, and at worst may compromise safety. There is a need for provenance and for supporting information.

**Documents Transfer**
- The requirement to be able to transfer documents is considered key and is linked with context.

**Information overload**
- A common view was expressed that there was a fear of information overload if important information is not made easily accessible.
- There was also a concern raised that critical information might be missing.

**Meaningful for people and professionals**
- The view was expressed that information must be meaningful for people who use services as well as professionals. Health literacy will vary, and complex terminology will not be understood by some people who use services.
- A need was also identified to train professionals in how to populate information to avoid confusion.

**What is core information?**
- There was confusion over what should be core information.
- The view was expressed that this definition of core information was aspiring to be comprehensive and not just essential information.

"Patients/people receiving care understanding what they are sharing and for what purpose and can easily and securely express and change their preferences on how their data is used. • Ensuring security and appropriateness of access • Willingness of health partners to share. • Understanding of GDPR 'vs' patient confidentiality. • Making sure it is easy for frontline staff to access the information- any additional barriers will prevent staff from accessing the information. • Driving information system development from a purely technical / digital strategy perspective not addressing care outcomes, will reduce shared data use and access to shared information. • Ability to fund the necessary skills training, care pathway developments, integrations and system supplier costs. • Data sharing is a people issue; it won't just be delivered by new software and hardware. • Silo working in care organisations focusing purely on internal operational needs creates inconsistent data standards and interoperability between key parts of the care economy" (Local authority - commissioning and social care professional)

"Integration will be slow and impeded by lack of interoperability between systems, IG requirements, cost and training time to implement" (Pharmacist, acute hospital)

##### 2.4 Q5. Which of the following benefits would people who use services get from contributing to the information held in their health and care records? For example recording their needs, values and preferences or measurements they have taken such as blood pressure.

Answered: 1,010 Skipped: 0

<p>///mermaid
xychart-beta
    title "Agreement on Benefits of Care Data"
    x-axis ["Improve communication", "Promote self-management", "Support joint decisions", "Improve efficiency", "Reduce burden", "Improve safety"]
    y-axis "Percentage of Responses" 0 --&gt; 100
    
    
    bar "Strongly agree" [61, 48, 56, 66, 40, 52]
    bar "Agree" [32, 36, 34, 26, 30, 32]
    bar "Neither agree or disagree" [5, 13, 8, 6, 22, 13]
    bar "Disagree" [1, 2, 1, 2, 6, 2]
    bar "Strongly disagree" [1, 1, 1, 1, 2, 1]
	</p>


|                                                                                             | STRONGLY AGREE | AGREE    | NEITHER AGREE OR DISAGREE | DISAGREE | STRONGLY DISAGREE | TOTAL | WEIGHTED AVERAGE |
| :------------------------------------------------------------------------------------------ | :------------- | :------- | :------------------------ | :------- | :---------------- | :---- | :--------------- |
| Improve communication including the timeliness of information sharing e.g. sharing test results | 60.95%         | 31.71%   | 5.25%                     | 0.99%    | 1.09%             | 1,009 | 1.50             |
|                                                                                             | 615            | 320      | 53                        | 10       | 11                |       |                  |
| Promote people managing their own care                                                     | 47.87%         | 35.68%   | 13.28%                    | 1.98%    | 1.19%             | 1,009 | 1.73             |
|                                                                                             | 483            | 360      | 134                       | 20       | 12                |       |                  |
| Support making joint decisions with professionals about their care                          | 55.74%         | 34.26%   | 7.72%                     | 1.29%    | 0.99%             | 1,010 | 1.58             |
|                                                                                             | 563            | 346      | 78                        | 13       | 10                |       |                  |
| Improve efficiency e.g. avoid repeating information                                         | 66.14%         | 25.54%   | 5.54%                     | 1.78%    | 0.99%             | 1,010 | 1.46             |
|                                                                                             | 668            | 258      | 56                        | 18       | 10                |       |                  |
| Reduce burden on professionals                                                              | 40.38%         | 29.86%   | 22.02%                    | 5.75%    | 1.98%             | 1,008 | 1.99             |
|                                                                                             | 407            | 301      | 222                       | 58       | 20                |       |                  |
| Improve safety                                                                              | 51.98%         | 31.55%   | 13.49%                    | 1.69%    | 1.29%             | 1,008 | 1.69             |
|                                                                                             | 524            | 318      | 136                       | 17       | 13                |       |                  |


- A large majority of respondents agree that people who use services would benefit from contributing to the information held in their health and care records.
- Front line staff, people who use services and their carers, vendors and administrators were least convinced that people contributing to their records would reduce the burden on professionals.
- Social care, mental health and learning disability professionals and people who use services were most convinced that people contributing to their own record would benefit them positively and that it would support joint decision making. Whereas vendors were less convinced that people contributing to their record would encourage joint decision making.
- Allied health professionals and social care professionals were least convinced that people contributing to their record would improve safety, but nurses and pharmacists thought the opposite, that people's contribution would ensure safety.

**154 people left comments**

A number of themes emerged from the qualitative analysis:

**Whole person view**
- This will facilitate a more holistic view of the individual and how they perceive their situation, needs and wants. The person's voice will be heard. The focus will be on the person not the pathway.
- Some people did express the view that they didn't see how it would actually help them manage their own care.

**Benefits realisation**
- Significant concerns were raised that potential benefits would not be realised if the development and implementation of the core information standard was not done well. It is not just about the information but about changing the business model and providing adequate training.

**Other potential benefits**
Several other potential benefits were identified including:
- Reverse the rise in treatment of those who have expressed the wish for no further treatment
- Reduction in prescribing errors
- Allow some care to be moved outside of the acute setting to the home e.g. routine out-patient appointments
- Use data for research and analysis to improve public health

##### 2.5 Q6. Can you see any issues arising as a result of people who use services contributing to and sharing their information?

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not Sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
	</p>

Answered: 984 Skipped: 26

| ANSWER CHOICES | RESPONSES |  |
| --- | --- | --- |
| Yes | 51.73% | 509 |
| No | 26.32% | 259 |
| Not sure | 21.95% | 216 |
| TOTAL |  | 984 |

*   Carers and midwives were the only groups from which a minority of respondents thought that people contributing to their own record would cause issues. Most carers said they were unsure, and midwives were split, with 33.33% responding yes, no and not sure.
*   Allied health professionals, patients, pharmacists, doctors and GPs foresaw the most issues with people contributing to their record. GPs were the most worried with 82.76% expecting issues to arise as a result of people using services contributing to and sharing their information.

573 people left comments



A number of themes emerged from the qualitative analysis:

**Data quality / accuracy**
Quite extensive concern about how the quality and accuracy of data entered by individuals could be validated. Concerns were expressed about:
*   Capacity to enter accurate data in particular regarding mental health issues, learning difficulties etc. Need to assess person's competence.
*   Person entering incorrect information which might result in a practitioner making an incorrect judgement.
*   Information may be out of date.
*   Particular concerns over patients entering medical data e.g. blood pressure incorrectly whether by accident or design. In the former, where does clinical responsibility lie? In the latter, for example, a patient may think they will get a better response if they were to exaggerate. Will clinicians need to validate data entered by patients?

**Information which may cause anxiety**
*   Concerns were expressed that it may cause undue anxiety to patients were they to access information which had not been shared with them by their healthcare professional, e.g. test results which were outside the norm.

**Inequality of access**
*   Concern was raised about those who might not have access to computers, e.g. the elderly, or those who might have learning difficulties.

**Information sharing - what next?**
*   Concerns were expressed that this would increase workload as, if information is shared, someone has to read it.
*   In addition, if a person enters data, is a professional expected to respond? This might range from a person stating that they had suicidal thoughts, to a delay in seeking help as the person had entered information which they might think would elicit a response, to the 'worried well' providing excessive information.

**Vulnerable users**
*   Concerns were raised about at risk or vulnerable patients being manipulated by others, in particular safeguarding issues where the person causing the risk might access information about the at risk person.

**Health and social literacy**
*   The use of complex terms, terms with specific meaning and acronyms etc. in both health and social care may be problematic for people accessing their information and this needs to be addressed as an implementation issue.

"A lot of information is open to interpretation by the reader, so the need for further explanation might arise and introduce delay, confusion or waste. However, I believe that the probable benefits outweigh the possible risks. Also, as a patient, I have seen how interpretation of information has led to poor communication among healthcare professionals. The patient/carer can act as "glue" when given access to their own information. And as much as professionals believe that they have communicated fully with patients, the truth is that patients often are not given full information about themselves. Some patients, of course, don't want this. I certainly do." (Person using services)

"A concern that when I contribute to my record - add something - that HCPs won't read it or action it. Currently I use the online prescriptions service, but my practice never reads any of the comments or questions I put in the free text box. They've told me that they don't have the time to read them." (Person using services)


"However big transformation needed. GPs in particular seem to be worried about capacity to read
information and act on it. We need to be clear with patient / citizen which of their information we will
act upon as soon as we receive it v that we will act upon at their next appointment when we see
them. We also need to put good informing in place.. not ask for consent. (Commercial lead / digital
consultant shared care record)

##### 2.7 Q7. Sections of the core information standard. Here is a summary of the key information included in the core information standard. Please rate how important this information is to you. Think about what information it would be helpful to know that you can't currently access.

Answered: 1,008 Skipped: 2

*   Overall most participants ranked all the information categories important and helpful to have access to.
*   People who use services ranked each field highly.
*   Respondents thought medications and allergies followed by 'about me' and problems and diagnosis were most important and placed the least emphasis on sharing participation in research and developmental skills.
*   Nurses, social care and allied health professionals specified safeguarding as one of the things they would find most important and helpful to access. GPs, secondary care doctors and people who use services all listed medications and allergies and 'about me' as most important.

No qualitative analysis was undertaken as this question was establishing the adjudged importance of each section.

##### 2.8 Q8. What, if anything, is missing from the list of core information?
Answered: 361 Skipped: 649

In response to the question on what is missing from the information model a number of respondents focused on functionality they would expect to see when accessing the information such as:

*   Signposting to relevant information or services
*   Weighting of importance of information for particular roles
*   Identification of frequency of visits (e.g. to A&amp;E)
*   Links between information e.g. legal documents and plans or link between problems and encounters
*   An audit trail of who had accessed what information
*   Ability to set sharing preferences
*   A record of complaints

Others focused on some of the challenges with navigating the amount of information that could be presented to the professional and the need to be able to easily find important and relevant information, so the need to consider the amount and presentation of the information to the end users.

The responses that focused on specific information items or categorise covered 7 key themes:

*   Social care – further work on care services/packages (including home care) and delivery, funding
*   Patient entered health data – e.g. from wearables and apps
*   Community recording
*   Dental and optometry records
*   Demographics – language preference, nominated pharmacy
*   Medications – adherence, administration

##### 2.9 Q9. 'About me' section for the person using services. This section is a record of the things that an individual feels it is important to communicate about their needs, strengths, values and preferences to others providing support and care. Should 'About me' be prioritised as part of the core information for everyone involved in health and care?

Answered: 1,003 Skipped: 7

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not Sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
</p>



| ANSWER CHOICES | RESPONSES |
|---|---|
| Yes | 81.56% |
| No | 4.69% |
| Not sure | 13.76% |
| TOTAL | 1,003 |

*   81.56% of participants think 'about me' information should be prioritised as part of the core information record.
*   No carers, pharmacists or midwifes responded saying that they didn't think 'about me' information should be prioritised.
*   Overall, less than 5% of respondents said they didn't want 'about me' information to be prioritised. 12% of GPs and 7.32 % of doctors held this position, as did 5% of patients and people who use services.

238 people left comments



A number of themes emerged from the qualitative analysis:

**Information being entered and kept up to date**
*   Concerns were expressed about who would enter the data (person using services or the professional), who would be responsible for it and how it would be kept up to date. The latter was identified by several respondents as a significant challenge.

**Concerns about information overload**
*   Concern was raised that people might provide too much information for professionals to digest.

5. Other comments
Other notable comments included:
*   Concern about disclosure of information not relating to the care being given
*   Should be optional
*   Especially important for those with complex needs or communication difficulties
*   Provenance is important
*   Needs to be structured to be useful
*   Useful for unconscious patients / palliative / elderly to know advance directives etc
*   Should include 'who is important to me'
*   Helps carers convey to the professional who the person is
*   Will need significant investment in training and incentives for it to be used.

"It should become the norm, like a birth plan, for anyone with a health condition. But not compulsory. A patient passport model also works well" *(OT in oncology + palliative care in an acute NHS hospital trust)*

"Not necessarily a priority but would be useful to capture at some stage. Patient-centred approach is beneficial but could be challenging if patients or carers can directly upload their preferences in a shared record. How do we manage preferences such as 'I need home visits as I have no transport'? What happens if a patient uploads 'I don't want any tests or investigations as they are pointless' - how do we accept this/capacity to make decision/legal obligation to honour preferences. I think it will need more thoughts on this section." *(GP)*

"Definitely. I think we miss this information in services at the moment and it hinders the care we provide. This is the sort of information that care professionals can know which can make the care people receive exceptional rather than good. It is extremely important- especially for cultural or religious practices or preferences that a person might have. It can enable a discussion with the person about the care they receive and can enable teams to be more thoughtful and person-centred when delivering that care. I've experienced breakdowns in teams and relationships between patient and healthcare professionals because this sort of information has been missed or assumptions have been made and the person hasn't been involved in having a say about the care they receive. Even if that's as simple as "I don't like tea I like coffee," or "I don't feel comfortable with male staff providing my basic care needs- I would prefer female staff". *(Clinical psychologist)*

##### 2.10 Q10. Alerts. This section is for any significant information meriting a specific and highly visible warning to any user (e.g. metallic implant, emergency keyholder information, potentially dangerous pet). Should alerts (e.g. metallic implant, dangerous dogs) be flagged as part of the core information set?

Answered: 1,003 Skipped: 7

<p>///mermaid
xychart-beta
    title "Count of Responses by Professional Role (Descending)"
    x-axis ["NHS administrati...", "Patient or service user", "Nurse", "Allied health professional", "Secondary care doctor", "Social care professional", "General practitioner", "Health/care system vendo...", "Mental health/learning...", "Pharmacist", "Carer", "Midwife"]
    y-axis "Response Count"
    bar [207, 189, 117, 107, 82, 82, 59, 43, 42, 42, 34, 6]
	</p>

| ANSWER CHOICES | RESPONSES |  |
|---|---|---|
| Yes | 86.54% | 868 |
| No | 1.79% | 18 |
| Not sure | 11.67% | 117 |
| TOTAL |  | 1,003 |

*   86.9 % of participants thought alerts should be flagged as part of the core information set.
*   Fewer GPs (65%) think alerts should be flagged than any other group.
*   No nurses, social care professionals or midwives disagree with sharing alerts

197 people left comments


A number of themes emerged from the qualitative analysis:

**Information being reviewed and end date noted where appropriate**
*   Concerns were expressed about data being kept up to date, and an end date entered if an alert is no longer appropriate. "Dangerous dogs eventually die. Alerts live on."
*   It was suggested that social care have good procedures for ensuring review and update.

**Categorisation**
*   It was suggested that alerts be categorised so that they would only be shown if relevant to the professional, with many giving the example that a clinician would need to know about a medical implant but not a dangerous dog, whilst the reverse may be true for someone on a home visit.

**Alert fatigue**
*   Concerns were expressed about information overload, with important alerts potentially being lost amongst more trivial information. In addition to categorisation, it was suggested that alerts should also be given a priority rating.
*   In relation to this, it was suggested that data quality could be mixed.

**Negative labelling**
*   Concerns were expressed about individuals being negatively labelled due to inaccurate or out-dated information.

**Informing individuals**
*   The view was expressed that any alert raised should be notified to the individual concerned and that they should have access to the data held and have the ability to challenge it.

"Generally sharing would be helpful, however there are some possible operational issues which need considering. For example, the definition of 'alerts' may differ between health and social care systems, some of which may not be of value to share with other agencies. Typically, data quality on alerts can be mixed, and different agencies may have different review dates/procedures for managing alert information." *(Social care professional, commissioning, local authority)*

"This section could easily become over used and important information be lost. It would be useful to split into categories e.g. information essential for medical treatment (metallic implant) vs info important for community care (dangerous dog), to allow people to filter what is relevant to them." *(Clinical Neuropsychologist, acute hospital)*

"Unreported metal skull implants prevented urgent MRI scanning in a recent emergency" *(Carer)*

##### 2.11 Q11. Assessments. This section is for documenting assessment scales such as mental health assessment scales, New York Heart Failure, Activities of Daily Living (ADL). Should assessment summaries (which include written assessment outcomes for social care and mental health) be included in the core information set?

Answered: 1,004 Skipped: 6

<p>///mermaid
xychart-beta
    title "Survey Responses (Yes/No/Not sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [51.73, 26.32, 21.95]
	</p>

| ANSWER CHOICES | RESPONSES |  |
|---|---|---|
| Yes | 71.41% | 717 |
| No | 8.37% | 84 |
| Not sure | 20.22% | 203 |
| TOTAL |  | 1,004 |

*   Most groups expressed some uncertainty, with just under 30% of participants saying 'not sure' or 'no' to including assessment summaries in the core information set.
*   Nurses and mental health professionals were most keen to include assessment summaries, more than 80% of both groups marked 'yes'.

**206 people left comments**



A number of themes emerged from the qualitative analysis:

**Information being entered and kept up to date**
Particular emphasis upon:
*   It should be an individual's decision as to whether assessment information is included or shared.
*   The currency of the information held. Different views were expressed as to whether only the latest assessment should be held or whether history might inform decision making. What was universally agreed was that the information should be up to date and should perhaps include a future review date.
*   Could an individual challenge information?

**Concerns about Information overload**
Concerns were expressed that there was a fairly high risk of information overload.
Suggestions ranged from:
*   Flag that an assessment had been made, but with no detail
*   Summary information only
*   Summary, with link to detail

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner and suggested that this information should only be available to professionals.

**Risk of negative labelling of individuals**
*   Several respondents commented upon the risk of individuals being negatively labelled due to out of date historic information and the need to ensure that information accurately reflects the current situation.

**Avoidance of repetition and duplication**
*   Several comments identified a benefit being that this would reduce the number of times that individuals had to repeat information to different professionals, and for that information to be duplicated across services.

**Other comments**
Other notable comments included:
*   There should be individual and professional-entered assessments
*   A view was expressed that formulation (professional interpretation of results) was key; conversely the view was expressed that it was irrelevant as subjective
*   The assessment should be linked to an encounter
*   Avoid clinical jargon and make it easy for the individual to understand.

"As MIU practitioner/paramedic, having access to up-to-date ECG will help identify any new cardiac problems or confirm an existing problem normal for patient." *(AHP, primary care)*

"Mental health needs particular safeguards and should be considered separately." *(Person who uses services and Carer)*

"Assessments vary so widely, particularly the free text elements and lack of common assessment approach across health and social care. This will likely mean the key data for the front-line staff is in the free text, and the free text options will vary greatly. This makes commonality for sharing very difficult." *(Business Analyst, social care, local authority)*

##### 2.12 Q12. Risks. Details of any risk a person poses to self, others or from others. This subsection is called risks. Does 'risks' describe this section well and is this what you would expect to see in it?

Answered: 995 Skipped: 15


<p>///mermaid
xychart-beta
    title "Survey Response Example (Yes/No/Not Sure)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [81.56, 4.69, 13.76]
	</p>


| ANSWER CHOICES | RESPONSES |
|---|---|
| Yes | 81.21%  |
| No | 3.52% |
| Not sure | 15.28% |
| **TOTAL** |  |

*   No nurses, mental health and learning disability professionals or pharmacists responded negatively and only 2% of social care professionals disagreed.
*   However, there was a lot of uncertainty across most groups. 15.28% of all respondents said they were unsure. 24% of pharmacists and patients answered, 'not sure'.
*   Nurses responded most positively with 92.04% agreeing that 'risks' describes the section well and the contents are as expected. 87% of allied health professionals and 81.82% of carers also responded 'yes'.

217 people left comments

A number of themes emerged from the qualitative analysis:

---

the information being entered and kept up to date
*   Particular emphasis upon the fact that information was subjective and that it needed to be regularly updated; suggestion that a review date should be held.
Flag risks
*   It was suggested that there could be a flag that risks existed (possibly colour-coded) so that professionals were immediately aware.
Security and confidentiality 'need to know'
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
Risk of negative labelling of individuals
*   Several respondents commented upon the risk of individuals being negatively labelled due to out of date historic information and the need to ensure that information accurately reflects the current situation.
Context is key
*   Whilst in part included in section two, the emphasis upon the importance of context and, in particular, date-stamping of information, makes this worth identifying as a theme in its own right.
Other comments
Other notable comments included:
*   How does an individual challenge information they perceive as incorrect?
*   Link to risk mitigation
*   Link to care / risk plans
*   Suspected risk?

"Could these be prevented as safety awareness instead of risk? If I read that my relative was a risk to other patients I may be upset. However, if there was a safety awareness message as to why they were a risk to others it may be easier to take. Also, person reading the message could make a quick assessment of what safety equipment or care package needs to be in place to protect others or the patient themselves." *(Neonatal Nurse, acute hospital)*

"Some elements of this are undoubtedly very useful, however, others appear quite vague. One question would be related to information that the individual is a potential risk to others - should the sharing of this data be exempt from sharing control by the individual? This information is vital for the likes of paramedics attending in an emergency situation and is the individual is at risk of being violent, then I personally would want this to be shared regardless of the individual's wishes." *(eHealth Pharmacy Adviser, NHS National Services Scotland)*

##### 2.13 Q13. Relevant past medical, surgical and mental health history. The record of the person's significant medical, surgical and mental health history. Including relevant previous diagnoses, problems and issues, procedures, investigations, specific anaesthesia issues, etc (with obstetric history). Looking at the information below, is this all the information you need to share as part of the core information set about an individual's past pregnancy history?

Answered: 993 Skipped: 17

<p>///mermaid
xychart-beta
    title "Survey Responses (Highest Agreement)"
    x-axis ["Yes", "No", "Not sure"]
    y-axis "Percentage" 0 --&gt; 100
    bar [86.54, 1.79, 11.67]
	</p>
	
	
| ANSWER CHOICES | RESPONSES |
|---|---|
| Yes | 72.91% |
| No | 5.54% |
| Not sure | 21.55% |
| **TOTAL** |  |

*   21.55% were unsure whether the information we listed was all you need to share as part of the core information set about an individual's past pregnancy history.
*   No midwives said they weren't sure, 83.33 % approved the information categories we identified for sharing regarding past pregnancy.
*   84.48 % of nurses responded 'yes' and no mental health professionals said 'no'.

189 people left comments


A number of themes emerged from the qualitative analysis:

**Currency of data**
*   Historic data should have an end date to indicate when it is no longer a current episode or diagnosis.

**Why pregnancy specific?**
*   There was widespread questioning as to why past medical, surgical and mental health history was pregnancy-specific and not general.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in Question 4 responses. Overwhelming responses that information should be accessed on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   There was emphasis on the fact that some of this information is highly sensitive e.g. terminations, miscarriages, sexual health
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner.
*   A few respondents stressed that information should only be shared with persons' explicit consent.

**Information overload**
*   The potential for information overload was stressed and suggestions ranged from simply flagging that there was information to be found elsewhere, or providing summary information, potentially ranked by importance.

**Mental health history**
*   Several respondents stressed the need to include mental health history.

**Other comments**
Other notable comments included:
*   The information will reduce in importance as a woman ages.

##### 2.14 Q14. Pregnancy status. The pregnancy state relating to women. Should current pregnancy status be part of the core information set?

Answered: 984 Skipped: 26

<p>///mermaid

xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [70.53, 7.32, 22.15]
	</p>


| ANSWER CHOICES | RESPONSES |  |
| --- | --- | --- |
| Yes | 70.53% | 694 |
| No | 7.32% | 72 |
| Not sure | 22.15% | 218 |
| TOTAL |  | 984 |

*   There were varying views on whether pregnancy status should be recorded.
*   All midwives who took part in the survey think current pregnancy status should be recorded in the core information standard, as do 95.24% of pharmacists.
*   Social care is split with 51.85 of social care professionals agreeing that current pregnancy status should be included and 37% 'unsure'.
*   No carers said current pregnancy status definitely should not be recorded, however 39.39% were unsure about it.

162 people left comments


A number of themes emerged from the qualitative analysis:

**Currency of Data**
*   The importance of this data being updated dynamically was stressed, particularly in the context of miscarriage.

**Only if pregnant**
*   There was widespread response emphasising that this information should only be held if relevant. In particular, respondents did not want to record if women were not pregnant.
*   It was observed that pregnancy status is relevant across many clinical settings and so was important to know.
*   It was also identified that this would be age-appropriate, and that data could be archived, e.g. post menopause.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. Overwhelming responses that information should be accessed on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Two respondents commented on the high risk of information becoming available to third parties through coercion which might be detrimental to the individual, e.g. an abusive partner.
*   A few respondents stressed that information should only be shared with persons' explicit consent

**Importance for prescribing**
*   Several respondents commented upon the importance of this information for prescribing, including post birth.

### 2.15 Q15. Correspondence This is a section where any correspondence relating to the person can be stored. Should the core information set include correspondence such as outpatient letters or letters from patients?

Answered: 997 Skipped: 13


<p>///mermaid

xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [67.60, 9.63, 22.77]
	</p>
	
| ANSWER CHOICES | RESPONSES |
|---|---|
| Yes | 67.60%  |
| No | 9.63% |
| Not sure | 22.77% |
| TOTAL | 997 |

*   People using services and clinical participants had similar responses with approximately 60% of these groups indicating that they think correspondence should be included in the core information standard.
*   Social care professionals were less sure, 56% agreed that correspondence should be shared.
*   Vendor representatives, NHS administration and management and pharmacy were keener for correspondence to be shared with 70%-80% of people suggesting it should be included in the core information standard.

Only 42.42% of carers said 'yes', 48.48% said that they were not sure about including correspondence in the core information standard.

**226 people left comments**



A number of themes emerged from the qualitative analysis:

**Is correspondence 'core'?**
*   Some respondents felt that correspondence was vital whilst others felt it was not 'core' information.
*   Some expressed the view that all relevant information would be coded on the clinical system and so the source should not be required.
*   A general consensus was that routine correspondence such as appointment letters should not be included.
*   If correspondence is included, it would need to be indexed, structured and dated.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Many correspondents identified that individual consent should be required.

**Information overload**
*   Many respondents commented on the particular risk of information overload if they needed to wade through correspondence in search of information. Some suggested summary information should be held.

**Third party information**
*   Several respondents identified the risk that third-party information might be included in correspondence and this had legal implications.

"This is one of the most valuable features of a care record, especially when the development of the record is in its infancy. If you watch a doctor in out-patients with a fat set of paper records the first thing they do is turn to the last letter to the GP or the last discharge summary. These records summarise the care so far and are an excellent starting point for the current consultation." *(Retired GP, primary care)*

"Too wide a topic and an overwhelming amount of data could end up being shared that no clinician would have the time to wade through. The key data points should be covered in the other elements of the information set. I suggest seeing how long it would take to wade through just 20 documents to find out if there is any valuable data and consider the reality of this in clinical practice. Even with advanced document management structures and advanced searching capabilities based on character recognition this task just will take too long for most clinical scenarios." *(Solutions management with focus on population health management and interoperability, third party supplier)*

#### 2.16 Q16. Safeguarding The following table of information is taken from the safeguarding and risks section of the core information standard. Should the core information set include details of historic (now closed) child protection plans? (A child protection plan acts to keep a child safe from abuse and neglect).
Answered: 998 Skipped: 12

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [69.54, 7.11, 23.35]
	</p>

| ANSWER CHOICES | RESPONSES |       |
| -------------- | --------- | ----- |
| Yes            | 69.54%    | 694   |
| No             | 7.11%     | 71    |
| Not sure       | 23.35%    | 233   |
| TOTAL          |           | 998   |

*   All midwives think that the core information set should include details of historic child protection plans.
*   Nurses and mental health professionals were keen to include historic plans with 85% and 83% responding 'yes'.
*   Only 50% of pharmacists and 58% of carers think historic plans should be included.

198 people left comments



**Differing views**
*   Historic information should not be held.
*   Historic information should be held but for a limited time; between one to 10 years or on reaching adulthood (although some individuals may wish for the history to be held).
*   A safeguarding flag could indicate that there had been a child protection plan (CPP) and the professional could find the information elsewhere (this was one of the most popular views).
*   There could be a link to the historic CPP.
*   An abridged version could be held.
*   The historic CPP should remain as it may influence future care decisions.

**Security and confidentiality 'need to know'**
*   Many comments reflected (or referred to) those in question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.
*   Many correspondents identified that individual consent should be required.

**Vulnerable adults**
*   Many respondents expressed the view that safeguarding should extend to vulnerable adults.

**Overlap with risks / alerts**
*   Several respondents observed that there seemed to be an overlap with risks / alerts.

"This is already covered by the Child Protection Information Service. Every clinician with a valid need should have access to this service (not just in urgent care as it is available currently)" *(Person using services)*

"50% of safeguarding alerts to my (adults) team in social services are closed as not meeting s42 Care Act. 2/3 of those that do are minor, and the risk has been managed/ eliminated even before the report is made. I feel that only serious or ongoing concerns should be recorded" *(Social care professional, local authority)*

"Extensive training is required for good quality safeguarding recording and responding - is this issue and the risk of recording and responding (not responding) built into this transformation - the information cannot just be shared into already under skilled and overloaded health and care services" *(Specialist midwife for change and transformation, multi-sector partnership)*

##### 2.17 Q17. Should disability be included as a separate section in the core information set?
(Mobility, cognitive and accessibility disabilities are currently recorded in individual requirements).

Answered: 993 Skipped: 27

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [64.29, 14.65, 21.06]
</p>

| ANSWER CHOICES | RESPONSES |           |
| :------------- | :---------- | :-------- |
| Yes            | 64.29%      | 632       |
| No             | 14.65%      | 144       |
| Not sure       | 21.06%      | 207       |
| TOTAL          |             | 983       |

*   All midwives thought that disability should be included as a separate section of the core information set.
*   Of all the other groups between 60 – 67 % said they think disability should be included as a separate section.
*   Despite 64.29% of respondents answering 'Yes', the overwhelming view of respondents was that it was very important that the data was included but that it should be part of 'about me' and 'individual requirements' rather than a separate section.
*   Several expressed the view that individuals don't want to be labelled by impairments.
*   A small number of respondents felt that it should be separate so that it was quickly and easily accessed, rather than perhaps looking through textual information which might be time consuming.

**154 people left comments**



A theme emerged from the qualitative analysis:

Security and Confidentiality 'need to know'
*   Many comments reflected (or referred to) those in Question 4 responses. This included access on a 'need to know' basis, with data only being shared if relevant to the service being delivered.

"This information often gets overlooked or swamped by a medical model of care. It is important in its own right." *(OT in Oncology + palliative Care in an Acute NHS Hospital Trust)*

"Support requirements should definitely be shared (the NHS England Learning Disability and Autism Forum told us this). The disability diagnosis is less important- some people want to share this, some people don't. So, things like adjustments to information, access, environment, treatment etc" *(Public engagement manager for learning disability and autism)*

"As a disabled person with multiple health conditions managing their own care, I can't access this at the moment and it would be so helpful to me if I could." *(Patient)*

##### 2.18 Q18. End of life This is the 'End of life' section in the draft core information standard.
Please read through the contents and answer the question below. Is this all the information needed for end of life care as part of the core information set?

Answered: 994 Skipped: 16

<p>///mermaid
xychart-beta
    title "Survey Results"
    x-axis [Yes, No, Not sure]
    y-axis "Percentage (%)"
    bar [69.11, 6.74, 24.14]
	</p>

| ANSWER CHOICES | RESPONSES |  |
|---|---|---|
| Yes | 69.11% | 687 |
| No | 6.74% | 67 |
| Not sure | 24.14% | 240 |
| TOTAL |  | 994 |

*   78% of clinical respondents think that we have included all the end of life information needed for the core information set.
*   68% of allied health and social professionals think the information we have included is correct.
*   59% of carers and 62% of patients are happy that we have included all the information needed for end of life care, as part of the core information set.

**212 people left comments**



A number of themes emerged from the qualitative analysis:

----


**Person-centred**

*   The observation was made that this should be more person-centred. There is a section for professional comment but not for individual or family comment. There is also a need to know whether the family has been involved in or is aware of preferences.

**Timeliness of data**

*   There is a need to ensure that this data is the most up to date and is accurate; DNR decisions can change and erroneous data could result in a death.

**Estimated prognosis**

*   Several respondents felt that this should not be included due to the fact that it is often inaccurate.

**Hospices and organisations that support end of life care**

*   There will be a requirement to share this data with hospices and organisations that support end of life care.

"You may also want to consider wishes for organ donation/medical research" *(Business and performance lead, mental health/ learning disability hospital)*

"Should it reference a RESPECT form if completed or other recognised end of life plans." *(Person using services)*

"This is a section where the person really could contribute and make their wishes known end of life wishes, e.g. food/drinks places and people music and light/comfort Living will could be attached. Continuing healthcare status DST attached Donor status also could be included, e.g. organs and preferences crematorium /burial funeral plans if no next of kin." *(OT, community care)*

##### 2.19 Q19. Do you have any comments you would like to add before submitting the survey?

Answered: 253 Skipped: 757

A number of themes emerged from the qualitative analysis:

###### Information governance
There is extensive concern about information governance in terms of:
*   What exactly are the rules?
*   Will access be restricted to role-based 'need to know'?
*   How secure and confidential will data be? There is a real concern that data will be hacked or will be sold to third party organisations for profit which will be to the detriment of the individual
*   What control will individuals have over giving consent for access in a flexible way; will they be able to give consent for some access but opt out for others?
*   Will individuals be able to correct or comment on information?
*   Will individuals have access to and control of all their data 'nothing about me without me'?
*   What, if any, plans are there to anonymise data and use for public health research and analysis?
*   A particular concern is that if individuals are not confident that data is secure they may withhold private and sensitive information which may increase the safety risk.

###### Information is up to date
*   The need for data to be kept up to date was consistently raised across many sections, in particular risks and alerts, and the risk of individuals being negatively labelled.
*   This was raised as a particular risk for DNR information. An individual's preferences may change as their situation changes and so having the most up to date information is vital. It is also essential that the information is verified as correct.
*   The question was raised as to who would have responsibility for ensuring information was up to date and accurate, particularly where data might be extracted from more than one source system.

###### Information overload
*   If user interface is not well-designed, there is a risk of information overload and not getting to the required information effectively and efficiently; this will require role-based access design.

###### Ambitious scope
*   Some concerns were raised that the scope of the standard is too ambitious and is more encompassing than 'core'; this requires widespread communication of the core information narrative.

###### Person held data
*   Although not a 'theme' as such, a couple of respondents raised the suggestion that the patient should have a card with their data stored upon it which they should take with them to interactions.

"The standards overall don't address concerns about the scope of access across a wide range of health and social care agencies. What happens when people don't wish for more sensitive information (e.g. HIV status, trauma history, domestic violence, details of therapy sessions) to be widely and readily accessible to all health/ social care professionals involved in their care?" (Consultant clinical psychologist, community care)

"The accuracy and pertinence of this data could become a burden on healthcare professionals. There is no guarantee that any records will be maintained and utilised correctly. Not having access to accurate and timely healthcare records can hinder treatment and increase harm. However the task to standardise this across so many systems and individuals is gargantuan." (Pharmacist, primary care)

"I work in the Out of Hours setting and often meet patients and their families for the first time before
having to make complex decisions about their on-going care. Having access to all of the above, in
an accessible format, would improve their care considerably.” (GP, urgent care services)

### 3 Conclusion

The findings detailed in this report have been synthesized and summarised in the core information standard final report, together with recommendations. Suggestions for additional requirements for the core information standard have been considered for inclusion in this release or future releases of the standard.

Reports

## Core Information Standard V2.01

* **Publication Date:** April 2026
* **Previous Release:** v2.0 (August 2021)

---

### Safety Relevant Changes – Data Items Relating to Sex and Gender

The following changes have been made to the clinical safety case report and hazard log:

* **Hazard Log Update:** Updated to version 2.2.
* **Safety Case Update:** Updated to version 1.8.
* **New Hazard Created:** Hazard 37 “Mis-interpretation of sex”.
* **Replaced Hazard 16:** Replaced “Sex data item may cause accidental disclosure of gender reassignment without consent” with a new hazard: 
  &gt; “Recording an individual's 'Gender identity' alongside their 'Sex at birth (observed)' in their clinical record and displaying together along with 'Administrative gender' (derived from the Personal Demographics Service) may cause accidental disclosure of transgender, non-binary or gender diverse status causing psychological harm”.

---

### Model and Implementation Guidance

The following changes have been made to the model and implementation guidance:

* **Model Uplift:** Uplifted from version 2.0 to 2.01 to align to the minor release version, including updated sex and gender data items.
* **Guidance Integration:** Section-specific implementation guidance is now included directly in the model.
* **Model Changes:** Documented in the summary table below.

#### Summary - Information model changes in this release

<table>
  <thead>
    <tr>
      <th>Location</th>
      <th>Data item</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td><strong>Person demographics</strong></td>
      <td>Gender<br>Sex</td>
      <td>Removal of data item(s)</td>
      <td>Data items removed following consultation.</td>
    </tr>
    <tr>
      <td><strong>Person demographics</strong></td>
      <td>Sex at birth (observed)<br>Administrative gender<br>Gender identity<br>Additional information about gender identity<br>Pronouns</td>
      <td>Addition of data item(s)</td>
      <td>• <strong>Sex at birth (observed)</strong> is a mandatory data item.<br>• <strong>Administrative gender</strong> is a required, read-only legacy data item for England only to represent the data held on the Personal Demographics Service (PDS).<br>• All other new data items are required in the core information standard.</td>
    </tr>
  </tbody>
</table>

## Core information standard v2.0 logical model

### Publication Date: August 2021

Updates have been made as part of the logical model project to:
* **Alignment with other completed standards** projects since the previous release (Dec 2018).
* **Maintenance issues** logged since the previous release.
* Updated more succinct **valuesets** for many elements for mapping to latest release of SNOMED CT, NHS data dictionary and to align to UK core R4 FHIR profiles
* **FHIR Target** added to represent the link to the UK core FHIR R4 where clinical and technical assurance has taken place
* **Datatypes** added to reflect a logical model
* Standard JSON extract exported to SPARX EA and UML entity and attribute diagrams developed
* **SNOMED Tags** added in places where clinical agreement of SNOMED CT codes has taken place to improve interoperability
* **Elements decomposed**: the data models for clinical concepts have been enhanced to be more structured. Includes:
    * addition of ‘coded’ and ‘free text’ fields for all coded elements, or
    * restructuring (eg) ‘Patient Address’ to include elements for each line of the address.
This aligns standards closer to the associated technical specifications and therefore makes them more implementable.

### Section: Person Demographics

<table>
<thead>
<tr>
<th>Elements</th>
<th>Update</th>
<th>Detail</th>
</tr>
</thead>
<tbody>
<tr>
<td>Person demographics</td>
<td>Updated section name<br>Elements decomposed<br>Metadata added</td>
<td>‘Patient demographics’ &gt; ‘Person Demographics’</td>
</tr>
<tr>
<td>Person name</td>
<td>‘Person Name’ has been restructured into a cluster with additional elements.</td>
<td>New elements added:<br>- Person first name<br>- Person Family Name<br>- Person preferred name<br>- Title<br>- Person name suffix<br>- Person full name<br><br>All new elements include updated value sets</td>
</tr>
<tr>
<td>NHS</td>
<td>New</td>
<td>Added to person demographics section to align to PDS and core</td>
</tr>
    <tr>
      <th>number status indicator</th>
      <th>element</th>
      <th>information standard.</th>
    </tr>
  
  </tbody><tbody>
    <tr>
      <td>Person's address</td>
      <td>Element restructured into a cluster with additional elements.</td>
      <td>New elements for:<br>- Address Line 1,<br>- Address Line 2<br>- Address Line 3<br>- Address Line 4<br>- Address Line 5<br>- Postcode<br>- Address Type<br><br>All new elements include updated value sets</td>
    </tr>
    <tr>
      <td>Person's contact details</td>
      <td>New cluster</td>
      <td>Cluster includes new elements for:<br>- Preferred contact method<br>- Person's telephone number details (cluster – see below)<br>- Person's Email Address details (cluster – see below)<br>- Other contact information (optional field)</td>
    </tr>
    <tr>
      <td>Person's telephone number details</td>
      <td>New cluster</td>
      <td>Associated elements:<br>- Person's telephone number<br>- Person's telephone number type<br>- Preference of telephone number</td>
    </tr>
    <tr>
      <td>Person's email address details</td>
      <td>New cluster.</td>
      <td>Associated elements:<br>- Person's email address<br>- Person's email address type<br>- Preference of email address</td>
    </tr>
    <tr>
      <td>Organ and tissue donation</td>
      <td>Moved element to 'person demographics' section.</td>
      <td>Previously recorded under 'Legal Information'.<br>Added to person demographics to align to PDS.</td>
    </tr>
    <tr>
      <td>Photograph</td>
      <td>New element</td>
      <td>Added to person demographics section to align to social care standards.</td>
    </tr>
    <tr>
      <td>Overseas visitor status</td>
      <td>New element</td>
      <td>Added to person demographics section to align to PDS.</td>
    </tr>
    <tr>
      <td>Place of Birth</td>
      <td>New element</td>
      <td>Added to person demographics section to align to PDS.</td>
    </tr>
    <tr>
      <td>FHIR Target</td>
      <td>New column added</td>
      <td>To align to UK core FHIR profiles<br>https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/Profiles/ProfileUKCore-Patient</td>
    </tr>
  </tbody>
</table>

### Section: Individual Requirements

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Individual Requirement</td>
      <td>Element renamed to 'Reasonable adjustment'</td>
      <td>Updated to align SCR</td>
    </tr>
    <tr>
      <td>Individual Requirement</td>
      <td>New element added</td>
      <td>Reasonable adjustment flag to align</td>
    </tr>
  </tbody>
</table>

with SCR

### Section: Participation in Research

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Participation in research</td>
      <td>New element added</td>
      <td>Identification code description:<br>Identification code of research study</td>
    </tr>
  </tbody>
</table>

### Section: Procedures and Therapies (previously ‘Procedures’)

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Procedures</td>
      <td>Section renamed to<br>'Procedures and therapies'<br>Description updated<br>Elements decomposed<br>Metadata added</td>
      <td>Section description:<br>"The details of any procedures performed. Includes both psychological and medical therapies and procedures (e.g. cognitive behaviour therapy, hip replacement)"</td>
    </tr>
  </tbody>
</table>

### Section: Risks

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Risk type</td>
      <td>New element added<br>Other sections removed to improve modelling: -<br>Risk to others<br>Risk from others<br>Risk to self<br>Risk of infection</td>
      <td>Includes start and end dates for risks.</td>
    </tr>
  </tbody>
</table>

### Section: Allergies and Adverse Reactions

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Allergies and adverse reactions</td>
      <td>1. Elements decomposed</td>
      <td></td>
    </tr>
    <tr>
      <td>Allergies and adverse reactions &gt; 'Reaction details' cluster</td>
      <td>Two new elements added<br>Metadata elements added</td>
      <td>New elements:<br>- Substance<br>- Route of exposure<br>- Allergy end date<br>- Comment</td>
    </tr>
    <tr>
      <td>FHIR Target</td>
      <td>New column added</td>
      <td>To align to UK core FHIR profiles<br>https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/</td>
    </tr>
  <tr>
    <td></td>
    <td></td>
    <td><a href="Profiles/ProfileUKCore-AllergyIntolerance">Profiles/ProfileUKCore-AllergyIntolerance</a></td>
  </tr>
</tbody></table>


### Section: Medications and Medical Devices

<table>
  <thead>
    <tr>
      <th></th>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td rowspan="3">Medications and Medical Devices</td>
      <td>1. 'Medications discontinued' cluster &gt; 'Description of Amendment' element removed.</td>
      <td>'Comment' section retained and description updated to include reference to amendments.<br><u>New element</u><br>Medications and Medical Devices &gt; Medication Item cluster &gt;<br>'Over the counter medication flag'<br>'Medication prescribed by'<br>'Medication trade family'</td>
      <td></td>
    </tr>
    <tr>
      <td>2. New elements added</td>
      <td>Medications and Medical Devices &gt; Medication Item cluster &gt;<br>Structured dose direction cluster &gt;<br>'Dose type'<br>'Maxdoseperperiod'<br>'Maxdoseperadministration'</td>
      <td></td>
    </tr>
    <tr>
      <td>3. Existing elements decomposed.</td>
      <td></td>
      <td></td>
    </tr>
    <tr>
      <td>FHIR Target</td>
      <td>New column added</td>
      <td>To align to UK core FHIR profiles :-<br><a href="https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/Profiles/ProfileUKCore-MedicationStatement">https://simplifier.net/guide/HL7FHIRUKCoreR4Release1/Home/Profiles/ProfileUKCore-MedicationStatement</a></td>
      <td></td>
    </tr>
  </tbody>
</table>


### Section: About Me

<table>
  <tbody><tr>
    <td>About Me</td>
    <td>Includes 8 new elements</td>
    <td>Description:<br>New elements:<br>- What is most important to me<br>- People who are important to me<br>- How I communicate and how to communicate with me<br>- My wellness<br>- Please do and please don't<br>- How and when to support me<br>- Also worth knowing about me<br>- Supported to write this by</td>
  </tr>
</tbody></table>


### Section: Care and Support Plan

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Care and support plan</td>
      <td>3 new elements</td>
      <td>New elements:<br>- Goal importance score<br>- Goal status<br>- Stage goal outcome</td>
    </tr>
  </tbody>
</table>


### Section: Services and care

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  <tr>
    <td>Services and care</td>
    <td>4 new elements</td>
    <td>New elements:
      <ul>
        <li>Social care package name</li>
        <li>Social care package type</li>
        <li>Local authority</li>
        <li>Care funding source</li>
      </ul>
    </td>
  </tr>
</thead></table>


### Section: Equipment and adaptations

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Equipment and adaptions</td>
      <td>New section added</td>
      <td>The name of the equipment (e.g. 'Keysafe', 'Handrail' 'Lifeline Alarm', etc.)
        <br><br>
        New elements:
        <ul>
          <li>Equipment name</li>
        </ul>
      </td>
    </tr>
  </tbody>
</table>


### Section: Primary support reason

<table>
  <thead>
    <tr>
      <th>Elements</th>
      <th>Update</th>
      <th>Detail</th>
    </tr>
  </thead>
  <tbody>
    <tr>
      <td>Primary support reason</td>
      <td>New section added</td>
      <td>To align with Social care standards
        <br><br>
        New elements:
        <ul>
          <li>Primary support reason</li>
          <li>Active</li>
          <li>Start date</li>
          <li>End date</li>
        </ul>
      </td>
    </tr>
  </tbody>
</table>

Release Notes

This standard is owned by NHS England and is made available for reuse or amendment under the Open Government Licence v3.0 (OGL 3.0).

core-information-standard

Professionals should be able to access the person’s shared care record electronically from multiple care settings

Citizen/ patients should be able to easily access the information in their shared care record digitally

The system should provide a view of structured data held in the GP record

The system should provide a view of structured data held in other primary care records e.g. pharmacy, opticians, dentists

The system should provide a view of unstructured general practice data such as PDF files/ documents e.g. clinic letters/ discharge summaries

The system should provide a view of unstructured data held in other primary care records e.g. pharmacy, opticians, dentists

The system should provide a view of any form of structured  community care data

The system should provide a view of any form of unstructured community care data

The system should be able to provide a view of structured data to ambulance services

The system should be able to provide a view of unstrucured data to ambulance services

The system should  be able to provide a view of structured data from out of hours services

The system should  be able to provide a view of unstructured data from out of hours services

The system should be able to provide a view of structured data from social care

The system should be able to provide a view of unstructured data from social care

The system should be able to provide a view of structured data from seconday care

The system should be able to provide a view of unstructured data from seconday care

The system should be able to provide a view of structured data from care homes

The system should be able to provide a view of unstructured data from care homes

The system should be able to provide a view of structured data from mental health services

The system should be able to provide a view of unstructured data from mental health services

The system should be able to display the same data items from different sources in a consistent way. For example pathology results amalgamated from different sources/ labs

The system should be able to filter patient data, for example, by care setting

The system should be able to identify/tag sensitive data (eg mental health) and display it when required

The system should support the implementation of an information governance/privacy model

The record should be able to be viewed and updated in near real time by professionals

The systems should be able to show an audit trail of the record versions (including time, date, author)

3.9 Participation in research (page 27 of 32) in 3 Section specific guidance (chapter 4 of 8) within Core Information Standard: Implementation Guidance