Information-sharing to support joined-up care

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Information-sharing to support joined-up care

Frequently asked questions

  1. What is a local health and care record?
  2. Why do we need standards for local health and care records?
  3. What will the new local health and care records do?
  4. What is the core information standard?
  5. What is the core information?
  6. How will information be used and what are the benefits of information sharing?
  7. When will the core information be used?
  8.  Who will be able to see the information?
  9. What are the principles you used to develop the core information standard?
  10. Will the core information standard change?
  11. Where does the content for the core information standard come from?
  12. There are other PRSB standards, how does the core information fit with those?
  13. Where can I find out more information about the PRSB and the core information standard?
  14. When will the core information standard be in place ?
  15. Can a person update the information in their health and care record?
  16. Will a person be able to say which information should be shared?

 

What is a local health and care record?
• Local health and care records are a regional collaboration across health, care and local authorities to develop shared health and care records to improve and coordinating individual care.
• Health and care professionals should be able to access the right information, at the right time to support care wherever it is provided (at their GP, hospital, community hospital or even at home).

2. Why do we need standards for local health and care records?
• Many local integrated health and care records exist already and are creating better joined up care for hundreds of thousands of people,
• But they are being designed and delivered independently of each other and so they lack common standards.
• This can create information silos that can’t support care when a person moves between areas, or when someone’s needs might be best served at a wider geographical level, eg at a national centre for a rare disease.

3. What will the new local health and care records do?
• They will demonstrate how information can be shared safely and securely, and for what purposes, across different places of care within a region for a large number of people (in the millions).
• They will show how appropriate information sharing directly improves the quality and efficiency of care while reducing health and care inequalities.
• The primary focus is to create integrated health and care records for providing care.

4. What is the core information standard?
• The core information standard is a standard for sharing information in health and care record. It is a consensus and evidence-based standard that defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using services.
• It is for use across the United Kingdom.

5. What is the core information?
• The core information consists of a person’s health and care history, interactions with services, current conditions, care plans and medications.
• It’s person-centred – it could include the key information that people want to share about themselves and their needs.
• It will support professionals to deliver care from before pre-birth to death.
• It’s information that can be shared in real-time across health and social care services and with the individual themselves.
• It will NOT include all information held about a person in every organisation across health and social care but what professionals and people think it is valuable and justified to share.
• Which components of core information are accessed and used will be different depending an individual’s role and information needs. (Rules are being agreed locally regarding who will have access to an individual’s core information.)

6. How will information be used and what are the benefits of information sharing?
• It will allow people to take greater control of their own health, wellbeing and care by sharing their needs and preferences and having access to their care records.
• Information will be shared in real-time across different care settings, organisations and geographies to enable the best joined-up care to be delivered.
• It will improve safety, reduce people having to repeat themselves and will avoid notes going missing.
• Anonymised health and care data may also be used to improve local services and research.

7. When will the core information be used?
• The Core Information could be used in any situation where care is being provided, particularly across teams, organisations, settings and geographies.
However:
• Who can access what information and how much will be determined locally, but based on the National Information Governance Framework.
• How the information will be presented for professionals and individuals is important and will be determined locally.
• Organisations participating in sharing and accessing information will be determined through local data sharing agreements.

8. Who will be able to see the information?
• The information will be shared with people who are authorised to see it – professionals, the person themselves and people acting on their behalf, for example a legal guardian.
• Not all professionals will see all the information. They will only see information when there is a clear professional and legal basis for sharing.
• Protecting the confidentiality of an individuals’ sensitive health and care data is paramount. NHS England is defining national rules and guidance for ensuring that this information is protected.

9. What are the principles you used to develop the core information standard?
• People and health and care professionals must be at the centre of defining the core information they need.
• Everyone should have the opportunity to have their say and contribute through broad consultation and engagement.
• The core information standard will build on existing standards where they exist.
• The core information standard defines the information needed – not how it is technically delivered.

10. Will the core information standard change?
The core information standard will evolve over time and with experience of its use.

11. Where does the content for the core information standard come from?
The core information standard was developed in consultation with health and care professionals and patients.

12. There are other PRSB standards, how does the core information fit with those?
PRSB standards are all aligned so that if the same information eg diagnosis, is required in a discharge and in the core information standard then it will be defined in the same way with the same meaning. This will enable information to be shared between systems without losing meaning.

13. Where can I find out more information about the PRSB and the core information standard?
Information is on the PRSB website at info@theprsb.org

14. When will the core information standard be in place ?
Version 1 of the core information standard has been published in draft and is now awaiting endorsement.

15. Can a person update the information in their health and care record?
PRSB has consulted on an individual’s ability to contribute to their health and care records. The results of the consultation have informed the core information standard that can be found here along with the final report and survey results.

16. Will a person be able to say which information should be shared?
People can already express an objection to their information being shared, which professionals will note, and that will not change.

Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.