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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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.”