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]

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.

View tools to support your PPI.

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)
Download

Feedback from researchers we've supported

Thanks to feedback, I was able to develop a protocol, consent forms and participant information sheets, that had minimal issues that were raised by the ethics committee. My study was approved within 2 weeks of application, which was much [faster] than I expected and if not for the feedback to fine tune the study, this would not have been possible.

William Lee

 Talking with the PPI contributors reaffirmed why I am completing this research. They motivated me to strive forward with the project to help benefit those affected by Parkinson's. I also obtained valuable insight into how everyday life is affected by Parkinson's and how "everyone's Parkinson's is different". The contributors gave me confidence in myself as a researcher and I cannot thank them enough!

Aliya Warden

[Parkinson’s UK staff were] helpful from the outset, provided options and good advice. They helped to ensure my request/advert for support was accessible and have provided valuable insight and access to a more diverse group of PPI contributors than I would otherwise have had. 

Researcher

[PPI contributors were] engaged, enthusiastic and have helped me develop a great proposal with people with Parkinson’s at the heart.  We have had ongoing positive engagement which will be essential and valuable in analysis and ensuring outcomes/outputs are relevant to people with Parkinson’s.

Researcher

[It was] very useful to hear about [people with Parkinson’s] personal experience of motivation problems, their thoughts regarding the research proposal and practical advice. Their advice has helped in the application for ethics approval, providing practical steps for accommodating people with Parkinson's at the research sites, and in shaping the interview schedule for the qualitative study.

Jamie Talbot
 

PPI contribution allowed me to take a more complete view of the process of diagnosis than the literature would have provided alone. It also brought a personal aspect to the research which helped me to understand the importance and impact of a Parkinson’s diagnosis and made the research feel relevant and meaningful.

Researcher

How can PPI help your study?

Watch the short video to find out how researchers are benefitting from PPI. 

Watch the video

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:

PPI in action concertina

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.

Find out more and read the recommendations. 

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. 

Read the report. 

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. 

Involving patients and the public in planning a future clinical trial. 

What do our PPI contributors think about the design and packaging of potential Parkinson's medication?

Discover other ways we can support your research

Recruit participants to your study
Recruiting participants

We can help you recruit participants by sharing your research with our supporters.

Recruit participants to your study
Staying connected with your participants
Staying connected with participants

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.

Staying connected with your participants