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 – such as health and education data – in research. However, it is particularly challenging to engage young people 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.
The research team explored 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 were from under-represented groups. The perspectives of young people living with diabetes informed the project’s funding application, and the project itself was co-produced with them.
The team have developed their findings into a toolkit for use across other health conditions and social impacts. This will inform the DARE UK programme and have broader impact, for example enabling research to support children with asthma at school, or young people with epilepsy in employment.
Principal investigators: Dr Rob French, Cardiff University and Lucie Burgess, Diabetes UK
Funded amount: £238,283
As part of the project, a creative communications campaign was produced and delivered across multiple social media platforms to recruit young people with type 1 diabetes from ethnic minority groups and socio-economically deprived areas to take part in focus groups on the use of health and education data. The film below is an example of the communications produced.