STEADFAST: Education Outcomes in Young People with Diabetes: Innovative Involvement and Governance to Support Public Trust
STEADFAST was a collaborative project focused on inclusive ways to engage young people in the use of their routinely collected data (RCD) for research and evidence-based policy.
Background
Diabetes is a common long-term health condition affecting around 40,000 young people in the UK. Managing diabetes requires daily attention, which can significantly impact a young person's education and wellbeing. The STEADFAST project explored these challenges through focus group discussions around the context and benefits of using RCD in research, but also explored the support available from educators and employers for managing type 1 diabetes (T1D) to develop appropriate interventions. 19 online focus groups with young people were held over Summer 2022.
Objectives
The main goals of STEADFAST were to:
- Develop inclusive models: Create robust and meaningful patient and public involvement and engagement (PPIE) and information governance (IG) models to foster public trust in research that uses large routine datasets
- Engage under-served communities: Involve a range of young people across the UK from socio-economically deprived areas and minority ethnic groups to ensure diverse representation
- Create a toolkit: Develop a toolkit for PPIE and IG that can be applied to other research areas
- Disseminate findings: Share the project's findings and recommendations to have a broad impact on inclusive research practices
Methodology
STEADFAST used several innovative methods to ensure inclusivity:
- Co-production with young people: Young people with T1D were actively involved in shaping the research. Their insights helped define the project set-up, methods and outputs of the work.
- Diverse partner involvement: The project included a wide range of relevant partners, such as charities, public advisory groups, a community engagement agency and researchers to ensure successful collaboration.
- Creative and accessible engagement methods: The project used poetry and spoken word in its social media campaigns to engage young people with T1D, specifically from minority ethnic groups and socio-economically deprived areas. These methods were designed to be accessible and appealing to the target audience.
- Patient and public advisory group: A group of young people with T1D advised the project, ensuring their feedback and advice were embedded throughout the project.
Key findings
STEADFAST identified several insights:
- Barriers to education: Young people with T1D face numerous challenges, such as a lack of awareness among teachers and peers, and difficulties managing their condition during education or work hours.
- Increased awareness and understanding: Wide public understanding and strong support are critical for the use of sensitive data in research, such as health and education data. Therefore, it is imperative to involve those who are often overlooked in research in these discussions and to tailor resources to significantly improve PPIE methods.
- Importance of inclusion: Involving young people in the research process leads to more relevant and effective solutions. Their lived experiences provide valuable insights that might otherwise be overlooked.
- Model for inclusive research: STEADFAST serves as a model for conducting inclusive research. By actively involving the target population and other key partners, the project demonstrates the value of a collaborative and inclusive approach.
Conclusion
The STEADFAST project exemplifies how inclusive research can lead to meaningful and impactful PPIE work. By prioritising the diverse voices of young people with T1D, the project not only improves awareness of their linked data in research but also sets a standard for future research initiatives across other health conditions and social impacts.
