The role of standards in delivering integrated care

The health and social care sector is currently experiencing a ‘boom’ of digital innovations, harnessing the power of data, increased connectivity and greater integration across different systems and settings, to improve the delivery of care. While it may seem that digital technology is key to driving these changes, it’s only a part of the solution. We also need to think about an agreed and consistent way of recording, storing and sharing data – and this is what standards help achieve.

Speaking on The role of standards in integrated care, a panel session chaired by PRSB’s CEO, Lorraine Foley at the Care Show, PRSB Patient Lead, Ojaih Willow, suggested: “Being able to share information is being able to participate in somebody’s own care – this underpins partnerships.” It’s hard to not agree with these words, as digital health data provides an opportunity to make health and care more personalised. In order to make it work, we need to facilitate the partnership between a person and providers by making information flow consistently, in a way that will help avoid frustrations and gain mutual understanding of a person’s needs and concerns.

Talking from her own experience, Ojaih added: “We need to think about how we feed information into the system, making it accessible and meaningful, while avoiding duplications. It is a problem when information is available, but not sharable. I have diabetes, and several procedures have been referred to me that I don’t need, as a result of such duplications.”

Imagine a scenario where you need to include information in the system only once to make it accessible and sharable across different health and social care digital platforms, in various locations – standards can help make it happen. Claire Sutton, Transformational Lead for The Independent Health and Social Care Sector at the Royal College of Nursing, agreed: “The key to making information shareable across all stakeholders is standards. Using them makes it much easier to share information about people who are receiving care. Transferring information from one system to another helps ensure the health and care providers who need it, can receive it immediately.”

While we’re seeing progress in the way that healthcare data is collected and structured, there has been less urgency in social care settings. Claire shared: “Social care is currently not very digitised and mostly uses a paper-based way to document information, which is challenging to feed it into the system. This is such a missed opportunity, as social care workers are excellent in knowing even the slightest details about the people they support. Providing them with digital solutions which are based on relevant information standards could help them bridge this gap and perform their work even more effectively.”

So, how do standards help achieve better integration and cohesion across health and social care? They include information that matters, which is what PRSB’s About Me standard embraces by allowing people to share information that they think is key to providing them with personalised and effective care. Expressing her thoughts on the standard, Jane Clark, Solution Owner at Graphnet, said: “We use About Me extensively – it’s repeatable across so many pathways of health and care. It helps start a dialogue between a person and a healthcare provider. Patients can finally feel they are not telling the same story over and over again.”

However, it is important to remember that information standards and digital technology should not be perceived as separate keys to integrated care, as agreed by Barbara Gale, Consultant and Clinical Lead for the ROSI Project: “Technology needs to work hand-in-hand with standards to make it all work.” At the same time, there should be a demand for a stronger collaboration between health and care professionals and system suppliers to make sure that digital technology is designed to bring tangible outcomes. “Co-designing and co-producing solutions is crucial – and this is how we’ve developed ROSI. It can be accessed by any professional, on any device”.

To help information standards become the norm in recording, holding and sharing data, we need to work on eliminating digital poverty and educate both patients and health and care providers how digital records can help transform a person’s care in combination with information standards, which are here to improve communication and ensure that the right decisions are made at the right time.

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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.