Patient and Public Involvement in research
It’s important that research is shaped by people with Parkinson's and the people who love and care for them every step of the way. We’re here to support researchers to involve patients and the public in their work in a meaningful way.
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.
Check out our patient and public involvement guidance for researchers.
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.
The 2025 Research Involvement Award (RIA) offers financial support to researchers seeking to work in partnership with people affected by Parkinson’s prior to submitting their application for a Parkinson’s UK Senior Research Fellowship grant. By facilitating early and meaningful PPI, the award aims to enhance the relevance, quality, and impact of Parkinson's research.
Before completing the application form, we recommend you read our PPI Guidance for Researchers which gives you practical advice on involving people affected by Parkinson’s in research. You can find additional information in our guidance for lab-based researchers.
To apply for a RIA, please download the application form and submit your completed form to [email protected] by 12pm on Thursday 15 May.
For further assistance with your RIA application, you can access our guidance document.
* Please note that we expect applicants who are successful in receiving a RIA to go on to submit a Senior Research Fellowship preproposal application to Parkinson’s UK in the 2025 grant round. Those who are unsuccessful at the preproposal application stage are permitted to use the RIA Award and continue with the proposed PPI plan as outlined in their RIA application.
Should you require more information or have any queries, please do contact the research involvement team at [email protected]
It’s vital that research involves, includes, and represents all members of the community. Only then will we be able to develop treatments suitable for everyone with Parkinson’s.
Considering the inclusivity of PPI activities early on in the research process can help improve your research.
So we’ve worked with members of the Race Equality in Research Steering Group to share resources to help you increase the diversity of those involved in your research.
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.
Request our support
To connect with people with Parkinson’s, simply download and fill in our PPI support request form (Word, 280KB) and return it to [email protected].
For more information - Read our Research Support Guidance (PDF 500kB)
Feedback from researchers we've supported
How can PPI help your study?
Watch the short video to find out how researchers are benefitting from PPI.
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.
The top 10 research priorities identified by people living with Parkinson's for better management of the condition. Read the paper.
What symptoms do people with Parkinson's most want to improve and how does this change as the condition progresses? Read the paper.
Discover other ways we can support your research
We can help you recruit participants by sharing your research with our supporters.
We've developed a toolkit that will help you stay in touch with your participants throughout your research study, making them more likely to be involved in research again.