People with lived experience in the Type 1 Diabetes Grand Challenge

What is patient and public involvement and engagement?

Patient and public involvement and engagement (PPIE) is when researchers and people affected by conditions work in partnership to plan, design, manage, evaluate and communicate about research.

Patients and the public can inform and shape research in a variety of different ways, from funding and planning the research to delivering a project and sharing findings. Involvement describes when people use their experience of living with a condition (like type 1 diabetes) to help researchers and organisations design and carry out their research. Whereas engagement describes when information about research and its results is shared beyond the scientific community in a way that fosters dialogue and collaboration.

A priority for the Type 1 Diabetes Grand Challenge is that researchers work in partnership with people affected by type 1 diabetes as much as possible.

Why is PPIE important?

As well as improving research outcomes, PPIE can be beneficial for the people with lived experience involved in type 1 diabetes research. It offers them the chance to learn more about diabetes research, how research happens, and gain new transferable skills.

Many people find it a rewarding and empowering experience, and a chance to help the type 1 diabetes community.

PPIE in the Grand Challenge

We ensure that Grand Challenge-funded research is shaped by people living with type 1 diabetes and the people who care for them every step of the way:

Consultation: We work with the Diabetes Research Steering Groups to identify priority areas for research in Grand Challenge. These discussions focus on addressing research gaps and highlighting the changes that people affected by type 1 diabetes most want to see in the future.

Collaboration: We encourage Grand Challenge researchers to involve people with lived experience at every stage of their research. This includes planning, design, management, evaluation, and the communication of research findings.

Co-production: Where appropriate, people with lived experience become a member of the research team by taking on the role of grant co-applicant, contributing directly to the research process.

To support these partnerships, we’ve set up a peer support network for researchers and people with lived experience of type 1 who are involved in Grand Challenge research projects. This helps everyone work together effectively and inclusively, ensuring that lived experience remains central to the research.

Grand Challenge Advisory Panels

We have several panels of people affected by type 1 diabetes who advise on which projects we fund. Their role is to convey the collective perspective of people living with or caring for someone with type 1 diabetes. They are involved in all stages of the funding decision-making process from reviewing the research proposals right through to interviews, when making decisions on which applications should be recommended for funding.

Involving people with lived experience of type 1 diabetes in the process provides the Scientific Reviewer College and applicants with a personal perspective, feedback on the benefit of the research to people living with diabetes, and thoughtful considerations around the PPIE aspects of their research.