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

糖尿病是一种常见的长期健康状况，影响英国40，000名儿童和青少年，需要日常管理。联合王国的四个母国有法律的承诺，支持有医疗条件的年轻人接受教育。然而，在提供证据支持干预措施方面存在重大挑战，公众的广泛理解和大力支持对于在研究中使用敏感数据，如卫生和教育数据至关重要。年轻人参与这种对话尤其具有挑战性。卡迪夫大学、英国糖尿病慈善机构及其合作伙伴的研究人员此前开发了一个数据访问框架，并成立了一个年轻人糖尿病小组，以支持对年轻人糖尿病教育成果的研究。STEADFAST项目将建立在这项工作的基础上。我们将探索最佳方式，让年轻人、他们的家人和更广泛的公众了解、参与和参与有关使用他们的敏感数据进行研究的重要问题。50%的参与者将来自代表性不足的群体。年轻糖尿病患者的观点为这一应用提供了信息，我们的项目将与他们共同制作。我们将把我们的发现发展成一个工具包，用于其他健康状况和社会影响。这将为DARE方案提供信息，并产生更广泛的影响，例如使研究能够支持在校哮喘儿童或就业的癫痫青年。

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.