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.

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 Policy (PDF 1.72MB)

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.

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