People-powered research: closing thoughts
Written by Matthew Sullivan.
I was diagnosed with Parkinson’s in 2010 age 45. After a year or so of all sorts of thoughts going through my mind, I decided I wanted to do something to help the Parkinson’s community. But what could I do? I can’t bake cakes and I’m never going to run a marathon, so I had to think well, what skills do I have that could be useful?
At that time I was a lecturer in biological sciences so I could offer some experience in science communication. I did some talks to Parkinson’s UK local groups and in 2014 I joined the group of volunteers helping to shape the Parkinson’s UK Research Support Network (RSN).
Under the leadership of Parkinson’s UK staff, a new philosophy and priorities for the RSN began to emerge. We identified a gap in the research process, namely patient and public involvement (PPI). And so over the last 5 years, we have been working to support researchers and people affected by Parkinson’s to work together. The group were very much ahead of the curve nationally in developing PPI and were soon being asked to support a number of other charities, institutions and researchers.
Now, we’re addressing some of the big questions in the field, such as: how can people affected by Parkinson’s be involved in lab-based research studies?, and how should we work with pharmaceutical companies to ensure their research is as meaningful as it can be?
This evolution of PPI support at Parkinson’s UK has been driven by some of the most hard-working and inspiring people I have ever worked with. In my opinion this work plays a vital role in Parkinson’s research. It improves research quality and relevance but, importantly, it also improves the empathy and understanding of all involved.
Personally, getting involved in research has given me immense satisfaction to know that I can make a difference and give something back. It also provides great mental stimulation, which does us all good! In this role I have met lots of dedicated researchers, volunteers and the lovely staff of Parkinson’s UK. You do not need a research background to get involved, just a healthy dose of common sense and to enjoy teamwork.
We hope you enjoyed reading the series of blogs we put together. We’ve outlined how we have been supporting people affected by Parkinson’s to work with academic and industry researchers, and the impact it can have. Let us know if we have convinced you of the huge benefits of working together!
Want more information?
To find advice and guidance on how you can involve people affected by Parkinson’s in your research visit our website — parkinsons.org.uk/research/patient-and-public-involvement-ppi
For people affected by Parkinson’s
If you would like to share your views and experiences to help shape research, visit our website to find out how you can get involved — parkinsons.org.uk/research/volunteer-help-shape-research
Read more blog posts in this series
- People with Parkinson’s can help shape research through patient and public involvement (PPI) — read this blog post to find out more.
- We’re helping researchers and people affected by Parkinson’s to work in partnership — find out how we provide hands on support.
- We are also working with pharma companies to ensure they are listening to people affected by Parkinson’s — find out who we have been working with.