1 Executive Summary (page 3 of 27) in Final report (chapter 2 of 5) within Core Information Standard: Reports

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.