9 Findings and Recommendations (page 11 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

A summary of the recommendations can be found in the table below:

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&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.