What works when working together? A practical guide for involving people with different neurodegenerative conditions in policy research

Description:

With funding from the University of Exeter’s Public Engagement with Research (PER) Springboard Fund, we were able to run a brief co-production project. We wanted to create some guidance for how to involve people with experiences of different neurodegenerative conditions in research. A group of ten people with experiences of four conditions (dementia, Parkinson's disease, motor neurone disease and Huntington's disease) came together to work on the project. Through online meetings, reflections and choosing the design, we have created a free-to-use resource which we hope will be helpful to many facilitators, researchers and more.

Through our meetings, the guide took shape to include not only topics such as ‘forming a group’ or ‘starting well’ but also ‘dealing with emotional topics’ and the differing – sometimes contradictory – accessibility requirements we need to negotiate to run successful involvement meetings for all.