STEADFAST: Education outcomes in young people with diabetes: innovative involvement and governance to support public trust.

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Diabetes is a common long-term health condition affecting 40,000 children and young people in the UK, requiring daily management. The four UK home nations have legal commitments to support young people with medical conditions in their education. However, there are significant challenges in providing evidence to support interventions.Wide public understanding and strong support are critical for the use of sensitive data in research, such as health and education data. Young people are particularly challenging to engage in such conversations. Researchers at Cardiff University, charity Diabetes UK and partners previously developed a data access framework and set up a Young People with Diabetes Panel to support research into education outcomes for young people with diabetes.The STEADFAST project will build on this work. We will explore the best ways to inform, engage and involve young people, their families and the wider public in important issues around the use of their sensitive data for research. 50% of participants will come from under-represented groups. The perspectives of young people living with diabetes informed this application and our project will be co-produced with them. We will develop our findings into a toolkit for use across other health conditions and social impacts. This will inform the DARE programme and have broader impact, for example enabling research to support children with asthma at school or young people with epilepsy in employment.