Patient and Public Involvement (PPI) is when researchers and people affected by conditions work in partnership to plan, design, manage, evaluate and communicate about research.
We want all Parkinson's researchers to work in partnership with people affected by Parkinson’s as much as possible. All researchers applying to us for funding are asked about their plans for patient and public involvement.
We have been building a world-leading programme to bring researchers and people affected by the condition together to improve Parkinson’s research.
Whatever your research, we can support you to involve people affected by Parkinson's in a meaningful and timely way. We have over 150 volunteers who are ready and able to work with you.
We support all researchers, including those from companies and the pharmaceutical industry, regardless of who they are funded by or applying for funding from. Since 2015 we’ve supported around 300 projects across academia/pharma.
We can help to:
- connect you with people affected by Parkinson’s, including our dedicated group of PPI contributors
- plan PPI activities to align with your resources and timelines
- facilitate meetings to help ensure everyone gets the most out of the sessions
- evaluate activities and share your learning with the Parkinson’s community and beyond
- link you up with one of our local Research Interest Groups to drive research forward at a regional level.
We tailor our support to your needs.
A lot of guidance has been written about how to actively involve patients and the public in clinical research, but there’s very little that is specifically aimed at researchers who work mainly in a laboratory.
So we helped develop a practical guide specifically for lab based researchers, which includes practical tips and case studies to help you start planning patient and public involvement in your research.
Testimonials from researchers and PPI contributors:
"It was a very humbling experience to see so many people with Parkinson's giving their time and energy to refine our research goals ... The feedback was in-depth not only pointing out potential stumbling blocks of our plans but also suggesting alternatives."
Angeliki Bogosian - City, University of London
"It was extremely useful to have feedback on the project overall and to help draft the English Summary. The whole process encouraged us to evaluate our desired outcomes better and to think more about how our work could be taken through to the clinical stage." Kerri Kinghorn - University College London
"[PPI] hugely improved quality of research. Had email from research participant saying this was the 1st survey they had ever done where they understood every question. Got large numbers of respondents - over 200 for 1st survey over 300 for 2nd - believe this was in large part due to clarity of info sheets and survey." Katherine Deane - University of East Anglia
"Zoom is a great platform to have [PPI] meetings in the comfort of our own homes. It was good being introduced to the people involved in the study and learning about their backgrounds. Also nice to have a quick chat with other people with Parkinson's." PPI contributor
"The scientists explained the proposed clinical trials in layman's terms ... any difficult areas were explained in full and due to the friendly and supportive atmosphere I felt comfortable enough to ask questions." PPI contributor
"I enjoyed learning and participating in the lively discussions. I was comfortable, felt well looked after. I believe it was a productive meeting, well worth the time, effort and expense needed to organize the day." PPI contributor
PPI in action
From defining research priorities to designing trials, people with Parkinson's and the people who love and care for them are playing a vital role in shaping research. Explore some of the key topics people affected by Parkinson’s have already had their say on:
We’ve been supporting research teams to understand what people with Parkinson’s want from research during this time, and how studies can be adapted to make participation safe and convenient.
In 2019 we carried out a survey of over 700 people with Parkinson's and a workshop to understand the views of people with Parkinson’s on the idea of offering genetic test to people newly diagnosed with the condition.