Our FRIEND Network (FRIEND stands for For Research Involvement Experts in Neurodegeneration) 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 FRIEND 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 FRIEND Network 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 FRIEND 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 FRIEND Network been involved in so far?
- Sharing their experience to the group, so that everyone can hear about neurodegenerative conditions other than their own.
- Volunteering to ‘train the researchers’ by creating videos explaining what researchers should know about living with, or supporting someone living with, a particular condition.
- Co-producing a practical guide to support inclusive cross-condition involvement called ‘What works when working together? involving people with different neurodegenerative conditions in policy research’. You can download and read the digital guide here. You can also watch a recording of the webinar on our YouTube series.
- Writing blog posts for the DeNPRU Exeter website on topics of interest, including the importance of lived experience involvement in policy research.
- Actively contributing to core research project groups.
- Presenting at webinars and dissemination events.
Recognising that policy research differs from other types of research, the FRIEND Network sees its role as crucial in bridging the gap between lived experience and policymaking. The group are continuing to identify new ideas and projects to explore, such as:
- Developing a resource, aimed at policymakers, to demonstrate the importance of lived experience in policy research.
- Writing an article about involvement in policy research for a peer reviewed journal.
- Mentoring and developing skills for capacity building among the group.
Download the DeNPRU Exeter Patient and Public Involvement and Engagement strategy (PDF).
Fancy getting involved? Contact us at denpru@exeter.ac.uk