Scotland’s data strategy aims to set the standard

With the recent publication of Scotland’s first Data strategy for Health and Social Care, Carol Sinclair, Chair of the Health and Social Care Data Board, sets out the key data standards commitments – and what it means for professionals and public.

It’s long been said that a journey of a thousand miles begins with a single step. In the context of such an inter-connected and complex landscape as health and social care, we’d be forgiven for asking who should move first! The truth is that it’s vital to get the underlying principles right – governance, infrastructure and – crucially – standards. 

For a number of years in Scotland, we have been working to map out the key priorities, and we are now beginning to realise tangible benefits as we enter the delivery phase. Crucially, we are not starting from zero as there are many excellent examples of where we are using data and using it well. However, there are things that we need to do better and these are at the heart of our data strategy.

The national Digital Strategy identifies the need to adopt information standards across Scotland’s public sector; and our over-arching Digital Health and Care Strategy similarly commits us to a cloud-based infrastructure based on common standards, with fully aligned systems, standards, and regulation in place across all services to ensure their effective delivery to the benefit of service users and providers alike.

Most recently, from extensive dialogue and engagement, we published the Data Strategy for Health and Care, that commits us explicitly to improving the quality of health and social care data and increase interoperability through adoption and use of common standards making it easier to re-use and to link data.

So where are we now, and where do we want to be?

We all recognise that in terms of digital, the health and social care landscape is fragmented, with a lack of consistency in the way that data is recorded. This is true not just within and between Health Boards, but also in social care and across the system that has been officially integrated since 2011. 

In social care, for example, there is an acknowledgement of the need for agreed information standards and data definitions, with increasing focus on the development of common social care standards such as PRSB’s HL7 FHIR UK. In addition, there is recognition of the need to achieve consistent governance in publishing, approving and maintaining information standards as seen with the Data Alliance Partnership Board that has mandated the use of some PRSB standards in social care settings.  

Work in this area has identified a number of recommendations such as ensuring a new National Care Service aligns with existing Scottish and UK government commitments on information standards; and ensuring that any new system procurements consider interoperability and open standards, as well as seeking to align with the standards published by the Open Standards Board.

In the context of the Data Strategy, we are already working with central and local government colleagues developing the National Care Service to ensure consistency of standards and agree shared priorities and deliverables, most notably in working together on the provisions of the National Care Service Bill on the creation of an integrated health and social care record. The Bill, currently at the start of the Parliamentary process, has provision for mandating information standards across health and social care, and more immediately we will explore preferred standards.  The Health and Social Care Data Board will oversee and approve the initial programme of this work.

Immediately following the Strategy’s publication, we embarked on a major mapping exercise – our first Digital Maturity assessment in three years, initially focusing on NHS Health Boards. We will look to organisations to reflect on their capability and complete assessments every two years, to target improvements on the use of data, with funding for identified priorities made available based on these assessments.

The Strategy highlights existing commitments that will underpin successful delivery through the use of common and preferred standards – for example terminology standards such as SNOMED-CT; and classification standards such as ICD11, where Scotland is among the first countries to take steps towards its implementation. We began this work in November 2022 and the next phase will focus on the coding transition from ICD10. This is an example of Scotland taking the lead on implementing national data standards to improve interoperability. And, overall, we have published a specific commitment to putting the FAIR principles and data quality at the heart of all data work in health and social care. This work will drive up interoperability and bring clarity to suppliers in what is expected when supplying technology and digital services in Scotland.

So, what’s next?

We have begun a programme of focused engagement work with our delivery partners, as identified in the Strategy, to further explore the issues, commitments and priorities we have identified. These conversations will help us develop our first Delivery Plan for the Data Strategy.

Alongside this, we remain committed to learning from the experience available from the rest of UK and our international partners – and, during our own work, where we learn lessons, we remain keen to share these too.

We all recognise these issues have been evident for some years and, as I began by saying, presenting a clear challenge in scale and complexity. But, with the publication of the Data Strategy and, with the support of our partners, we are ready to take that next step. In all of this, we greatly value the work and support of the PRSB – and would welcome members’ views and contributions as we move forward.

Please take part in the conversation – you can reach us at HSCDataStrategy@gov.scot.

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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.