4 Consultation and Engagement (page 6 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

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:

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.

"It was really good to hear the different perspectives and the tables were well balanced. Case studies were challenging and represented real world complexity."

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.