Our Involvement Network exists to involve experts by experience in all aspects of our policy research: only they can tell us what it feels like to live with a neurodegenerative condition or support a family member/friend living with one.
The Involvement Network is facilitated by Rachael Litherland, a Co-Director of Innovations in Dementia, who has a wealth of experience in involving people with lived experience in health research.
The Core Involvement Group meet regularly and are involved in a wide range of DeNPRU Exeter activities. The broader Network gets involved in the parts of the work which interest them and when we need to gather further views. Members of the Involvement Network are also part of individual projects when it is a topic they want to work on more closely. They help the research team to keep lived experience at the heart of their work.
What has the Involvement Network been involved in so far?
- Introduced their experience to the group, so that everyone can hear about neurodegenerative conditions other than their own.
- Volunteered to ‘train the researchers’ by creating videos explaining what researchers should know about living with, or supporting someone living with, a particular condition.
- We got a small amount of extra funding to run a short project called ‘What works when working together? Involving people with different neurodegenerative conditions in policy research’. Some members of the Network are participating in this. Download and read the ‘What works when working together?’ project information sheet (PDF 3Mb).
Download the DeNPRU Exeter Patient and Public Involvement and Engagement strategy (PDF).
Want to get involved? Email denpru@exeter.ac.uk.