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.

Introduction to PPI

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. 

Check out our patient and public involvement guidance for researchers.

How can we support you with PPI?

We support all stages of the research pipeline, from lab-based, fundamental research through to clinical studies. We can support you regardless of who you’re funded by, or are applying for funding from.

We can help you:

  • connect with people affected by Parkinson’s, including our dedicated group of PPI contributors
  • plan PPI activities that take into account your resources and timelines
  • consider how you’ll evaluate your PPI activities and share your learnings with the Parkinson’s community and beyond

We tailor our support to your needs.

Request our support

Simply download and fill in our PPI support request form (Word, 280KB) and return it to [email protected].

Due to high demand, please allow up to 8 weeks from sending us the PPI support request form for us to share your research with our networks.

Read our research support policy (PDF 500kB) to find out what research we can support. Researchers looking to hear from the Parkinson’s community should contact the Parkinson’s UK research team before approaching groups or posting on the discussion forum.

Further support

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 PPI in lab-based research

If you’re thinking of involving people with Parkinson’s and those that support them in your research, it’s important that you can communicate with them in plain language. 

Read our guidance on writing a plain English summary

Applications for the 2026 Research Involvement Award are now closed.

Researchers applying for a Parkinson’s UK Senior Research Fellowship can apply for a Research Involvement Award. The award offers financial support so researchers can work with people affected by Parkinson’s as they develop a grant application. By facilitating early and meaningful involvement, the award aims to enhance the relevance, quality, and impact of Parkinson's research.

Be the first to find out about funding, events, news and opportunities in the world of research by signing up to Synapse, our newsletter for the Parkinson's research community. 

Sign up to Synapse

Feedback from researchers we've supported

I found this process highly rewarding. The feedback was exceptional and helped me to shape the materials so they could be better understood outside of the research community. I would definitely take part in this process again.

Alan Hodgkinson, King’s College London

Working with the Parkinson’s UK PPIE group fundamentally shaped our research. Their insights reminded us that the route to diagnosis is not always straightforward and that pain can present in diverse and surprising ways. They helped us redesign our questionnaire to make it clearer, less wordy, and more accessible. Their advice [...] has made our study more user-friendly and more representative. The PPIE input was invaluable in ensuring our research reflects real patient experiences and priorities.

Emma Beecroft, Newcastle University

[Working with PPI contributors] helped to improve our communication to a non-technical audience. 
The discussion with the contributors was very engaging, underscoring some of the key therapeutic concerns, and invigorating the team.

Alastair Corbin, Pathios Therapeutics Limited

[Parkinson’s UK] were integral at helping me reach individuals to recruit for my discussion groups. I was able to get in touch with individuals from all over the country through their networks, they were able to disseminate my survey which vastly increased the number of responses and they were really helpful at teaching me the best ways to conduct PPI work with people living with Parkinson's.

Laura Wright, Newcastle University

[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

Case studies

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 ways we've supported people with lived experience of Parkinson’s in working with researchers. 

Philippa Clay, a speech and language therapist and researcher at UCL, has been working with people affected by Parkinson’s to develop a speech and language approach for people with Parkinson’s and their loved ones.

Read the paper on developing a speech and language approach

The biopharmaceutical company, UCB, ran a workshop with people with Parkinson's and those that support them to help plan a future clinical trial. 

Read the blog on planning a clinical trial

Kali Barawi, a researcher at Cardiff University, worked with people affected by Parkinson’s to design a survey to understand people with Parkinson’s views of advanced therapies. 

Read the blog on advanced therapies

Jessie Tebbutt is a researcher at the University of Sheffield. Her research focuses on improving mouth and dental health for people with Parkinson’s. To make sure her project was of interest and relevance to the Parkinson’s community she ran a focus group, and had individual calls with people living with Parkinson’s. 

Read the blog on oral health.

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
Race Equality in Research programme
Race equality in research

It’s vital that research involves, includes, and represents all members of the community. Find out about our Race Equality in Research programme and discover how you can help us work towards race equality in Parkinson’s research

Race Equality in Research programme