No Research About Us without Us: R&D Forum conference poster

Background:

People with an intellectual disability face significant health inequalities and often access mainstream health services with poorer outcomes. We know that to gain the most benefit from the findings of research your needs have to be represented in that research. A group of academics, accessible information specialists, self-advocates and learning disability charities has joined together to explore and evaluate what it actually takes to work together, ensuring that people with an intellectual disability are part of the leadership and design of research.

Method:

We explored what the literature said about co-production, co-researchers and the barriers to people with an intellectual disability being part of research leadership. We identified the key principles of collaborative working. We created a bespoke evaluation to explore if we are working to the standard of the key principles of inclusive research.

Findings:

• We outlined in a Terms of Reference how we would work together and how we would check if we were doing what we promised.

• We will share these Terms of Reference.

• We will share the successes and challenges we have encountered in sharing power and leadership in health research.

• We will reflect on the personal and system-based challenges to sharing leadership in health research.

Conclusions:

Working collaboratively so every partner is an equal and a research team shares power is a challenging process. Many research systems are not designed to support this way of working. It takes time, resources and (sometimes challenging) self-reflection and honesty but we have insights to share to support people with intellectual disabilities co-leading health research.