9.3 Person-centred record (page 12 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

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.