Spotlight on Diabetes: Children and young people help shape diabetes care through DigiBete and PRSB Pilot

Diabetes image

Young people with Type 1 diabetes are playing a central role in shaping how their health information could be recorded and shared in the future, thanks to a pioneering pilot project by DigiBete using the PRSB Diabetes Standard.

The pilot focused on implementing PRSB’s Diabetes Information Standard within the DigiBete app, a digital tool that supports children, young people and families to manage diabetes day-to-day. The aim was to improve how self-recorded information is captured and shared with healthcare professionals to ensure more personalised, effective care.

Putting young people at the heart of the design process

Children and young people were asked what they want to be able to record in the app—such as insulin doses, mood, or lifestyle factors—and what information they felt was helpful to share with their care team. Healthcare professionals were also consulted on what kind of patient-generated data would support clinical decisions and enhance consultations.

Using this feedback, DigiBete developed two design prototypes: one showing how self-management information could be recorded within the app, and another demonstrating how this data could appear within a clinical portal. The designs included examples such as insulin dosing logs and self-report assessments on diabetes distress and hypoglycaemia awareness.

These were evaluated through workshops and focus groups and refined based on feedback from both young users and clinicians. The pilot found that enabling young people to complete self-assessments before appointments—on topics like emotional wellbeing or fear of hypoglycaemia—could help professionals provide more responsive, tailored care.

Building on the pilot’s success

The DigiBete team mapped existing data to the PRSB standard and identified opportunities for deeper functionality, including plans to integrate Continuous Glucose Monitoring (CGM) data, from wearable devices.

With strong support from users and professionals alike, the next phase involves live trials in clinical settings, with the goal of rolling out the improved system more widely to benefit young people across the UK.

By aligning with PRSB standards and co-designing with the people who use and deliver care, this project demonstrates how digital health tools can be integrated more meaningfully into clinical practice—empowering young people, supporting clinicians, and improving care outcomes.

To learn more about our Diabetes Standard, please visit https://theprsb.org/standards/diabetesstandards. If you’re interested in implementing the standard in your system or exploring conformance opportunities, please contact us at partners@theprsb.org.

Find out more: Read the full report from Digibete 

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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.