Improving epilepsy care using data standards

Young boy being treated in consultant outpatient surgery

 

Colin DunkleyBy Dr Colin Dunkley, Paediatric Consultant and Clinical Lead, Epilepsy12 Audit, RCPCH

For over a decade, many have been working to make epilepsy care more joined-up by using data in smarter ways. As a paediatric consultant and lead for the national Royal College of Paediatrics and Child Health Epilepsy12 audit across England and Wales, my focus has been on how we can together use accurate children’s health data to create meaningful improvements whilst also facilitating better clinical care and research opportunities.

 

Epilepsy is a common group of long-term neurological conditions that can disrupt lives in dramatic, unpredictable and variable ways. People with epilepsy present to all parts of the health acute and non-acute health system. Seizures often begin and continue at home, in school, at hospital and ‘at the seaside’ and resulting care needs need to be highly individualised and adjusted. Monitoring and diagnostics are becoming increasingly more digital, video on smartphones is emerging as a key diagnostic resource, drug treatment plans change frequently, medication continuity is critical, and care plans must be joined up to be effective across health, education and wider community settings. Often information is not shared, inconsistent, inaccurate, duplicated or absent. Families and professionals are often left to fill in the gaps or move information from one location to another.

Through RCPCH Epilepsy12, our national audit for children and young people, we’ve tried to identify and close gaps in care provision. Since 2009, we’ve gathered data from across England and Wales, following children’s journeys from first presentation over the first 12 months. Our most recent report, covering over 3,000 newly diagnosed children, shows ongoing improvements in many areas of care quality. But it also highlights where the system still fails to deliver and where variation exists between services and between different groups of children.

One clear reflection is that whilst we’ve become good at analysing, understanding and visualising the data once we have it, the real struggle has been getting the data easily and reliably in the first place. There is little that even the best human or artificial intelligence (AI) can usefully or safely do if the information it is considering is inadequate.  Manual entry by clinicians can often be slow, inconsistent, and prone to gaps. It introduces a burden of time that could be spent providing actual clinical care.  Although information is often held digitally in digital health records or databases it often is in a format that only works locally and is often not easily shared.  That’s why a next key step has been standardisation of that information across the health systems, and why we came to PRSB.

We started working with the PRSB in 2023 to build a national data standard for epilepsies. We realised early on if it is to ‘work for children’ it also needs to ‘work for adults’ and be rooted in wide participation with clinicians and service users.   The information about epilepsy health needs to embed alongside other health information and this appears to be particularly important for epilepsy given the interactions with development, learning, mental health, pregnancy, fertility, frailty and so many other health and social factors.

By building the model within a ‘whole health, whole population data standard solution’, what surprised me most was how much already existed for other long term health conditions that could also work for epilepsy. Diabetes as an exemplar has acute presentation elements, long term condition elements, wearable devices, care plans and many long-term complications and outcome measures.  Using PRSB’s approach – what I’ve grown to understand as a “Lego brick” model – we found most of the building blocks we needed were already in place. Only a few epilepsy specific areas, such as outcome measures and diagnosis-classification elements, needed to be newly built to get things started.

With this standard, we can now work towards a future where data flows not only automatically from healthcare records into audit systems, but also powers self-management tools, care planning, referrals, wearables and other devices, screening tools, pharmacovigilance and ongoing risk assessments and flagging for issues such as SUDEP (Sudden unexpected death in epilepsy).  The NHS vision of a single patient record and utilising the NHS App should provide great opportunities for building digital tools and bolt-ons specifically to support the complexity and unpredictability of those with epilepsies.

Through wide consultation and citizen participation and building on what already is in the data standard we’ve been able to consider all life stages. From fertility to pregnancy, birth to childhood, transition to adulthood and end of life.  Transition is a key pressure and risk point for those with epilepsy, so designing something that works across the lifespan and life journey makes sense. Our citizen co-leads (had experience transiting from paediatric to adult epilepsy care) were central in shaping this.

Having a standardised data model is fundamental, and PRSB has been a great vehicle for creating something that is designed to connect across systems. We’re aiming to complete the design of work by the end of 2025.  Alongside this we are currently planning the future directions of Epilepsy12, and we’re looking to map to patient level data and clinical outcomes more effectively across the NHS. We’ve been watching diabetes transformation closely as it’s a condition that’s already thriving with wearables and digital tools, generating potential streams of real-time data alongside ‘closed loop’ benefits. There will be many useful parallels for epilepsy as we think how to bring tech and data together in meaningful ways around the person.

My final big-picture thought is to consider information flowing not just as an opportunity for ‘patient pathways’, but on opportunities for seamlessly accompanying and enabling life journeys. We need to reimagine health provision to stretch outside of traditional ‘health bubbles’ and enable best life journeys-wherever they are occurring and wherever they may lead. 

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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.

CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”