Welcome to the first of our new blog-series! Let’s kick off in style with an introduction to Patient and Public Involvement and Engagement (PPIE) in policy research.
PPIE has become a vital part of the research landscape. No longer is research something done to people; it is increasingly done with and for the communities it aims to serve. PPIE involvement can include:
- Helping to identify research and/or policy priorities
- Contributing to the methodology and design of research
- Advising on how to share findings in informative, accessible ways
- Sharing views and experiences in consultations or focus groups
An essential part of DeNPRU Exeter is our PPIE group, known as the FRIEND (For Research Involvement Experts in NeuroDegeneration) Network. Led by Rachael Litherland, co-director of Innovations in Dementia, the Network exists to involve people with lived experience of dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease (MND) in all aspects of our policy research. The wider Network is made up of over 40 people with lived experience, and there is a smaller core group of around 20 people known as the FRIEND group.
The golden thread throughout our work is meaningful engagement and involvement. Everyone across the Network can get involved in activities that are of interest to them. The voice of those with lived experience help us see the bigger picture and guide how our projects grow and adapt through feedback and open conversation.
Allison, a member of the FRIEND group, shares her views on the importance of involving those with lived experience in policy research:
“I strongly believe that any researchers should involve people with lived experience. This should include people who are living with the condition and people who care for or who have cared for someone with the condition. This way you get a balanced viewpoint, resulting in a better outcome. My advice to any researcher is to not be afraid to involve people with lived experience. Remember nothing should be done for us without us because you don’t know what we need. I’m involved in the FRIEND group which includes people affected by dementia, MND, Huntington disease & Parkinson’s disease, resulting in a very strong, passionate group and it is truly amazing.”
Last year, the FRIEND group co-created a practical guide to support the involvement of people with different neurodegenerative conditions in policy research. You can explore the guide and learn more about our FRIEND group on our website.
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By Allison, expert by experience and FRIEND group member, and Emily Adams, Stakeholder Engagement and Impact Manager.
With special thanks to Allison for her contribution.