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