What is involvement?
Ahead of her panel session “So you want new treatments…” at 1.20pm PDT today, we caught up with Claire Stephenson, Research Support Network Manager at Parkinson’s UK, to find out more about involvement in research.
What is involvement and how is it different to people taking part in research?
People affected by Parkinson’s getting involved in research means that instead of having research done to them (taking part) — research is done with them — in partnership. People affected by Parkinson’s work in partnership with researchers to plan, deliver and share Parkinson’s research. This ensures that people with Parkinson’s are at the heart of research, making it more relevant, higher quality and more likely to succeed.
How are Parkinson’s UK leading the way for involvement?
Our new Involvement volunteer role brings together people affected by Parkinson’s and researchers and Parkinson’s UK work to facilitate this partnership. This role combined with our Research Support Network — the only network of its kind — means that Parkinson’s UK is in a unique and exciting position to ensure that meaningful partnership working between patients and researchers becomes best practice in Parkinson’s research in the UK and beyond.
What would you say to someone who thinks they can’t get involved?
We are working hard to ensure that our Involvement volunteer programme is accessible for everyone. All of our volunteers choose when they are able to get involved with projects so the role is very flexible. A significant part of the role can be done from home and although currently the training is done face to face, our plan is to design training that can be done at home too.
And what do you hope people will take away from the session?
That there are many ways that they can contribute to vital Parkinson’s research. That they are equal stakeholders in research, they have a unique and valuable perspective to offer and should have their say!
What’s one thing would you recommend for people to do after this session?
Find out more about how you can contribute to research in your country!
If you’re from the UK and at #WPC2016, come and speak to me after the session or get in touch with us on researchinvolvement@parkinsons.org.uk
Also come and see me at the Clinical Research Village on Wednesday, Thursday and Friday 12–1:15 or Wednesday and Thursday evening 5:30–6:45pm in Exhibition Hall A.
