Patient and Public Involvement (PPI)

Patient and Public Involvement (PPI) is when researchers and people affected by conditions work in partnership to plan, design, implement, manage, evaluate and disseminate research.

Alongside other major funders, Parkinson's UK wants to see evidence in applications for funding that people affected by Parkinson's have been or will be involved in the research.

Whatever your research, there are many ways we can support you to involve people affected by Parkinson's in a meaningful and timely way.

Watch our short film to hear from researchers about the benefits of involving people with Parkinson's in their work.

Guidance and top tips

Download our Patient and Public Involvement: Guidance for researchers (PDF, 1.8MB), which gives practical tips and advice for involving people affected by Parkinson's, including:

  • what is patient and public involvement?
  • methods of involvement, in both clinical and basic research
  • how to ensure involvement is meaningful

Connecting you with people affected by Parkinson's

We have lots of people affected by Parkinson's who are willing and ready to be involved in your research.

We can connect you with people affected by Parkinson's by:

  • emailing our Research Support Network, a community of over 4,500 people interested in Parkinson's research across the UK
  • putting you in contact with our panel of PPI volunteers or local groups across the UK

Email us at [email protected] to connect with people today.

Support and funding

If you want to involve people affected by Parkinson's, but need more help, you can now apply for a Research Involvement Award

Successful applicants will receive hands-on support from staff in developing appropriate PPI activities to meet the specific needs of the research, including;

  • identifying and recruiting people to involve
  • planning the appropriate method for involvement
  • facilitation and funding of the first meeting with PPI contributors
  • feeding back and maintaining relationships

Visit our page on Research Involvement Awards to find out more, including how to apply.

Evidence of the impact of PPI

Last year we ran a pilot project to prove the difference that PPI can make to Parkinson's research.

Read our executive summary (PDF, 376 KB) to see examples of how PPI had a significant impact on:

  • improving how researchers communicated
  • making the research design more practical
  • providing a 'reality-check' and motivating researchers
  • conserving time and resources

You can also read the full report (PDF, 160KB) of the findings.

Our Research Support Policy

You can read more about how we can help in our Research Support Policy (PDF, 438KB).

Please note that researchers seeking involvement are not permitted to approach local groups or post on the discussion forum without prior approval from the Parkinson's UK research team.

Speak to the research team

If you need more help or want to discuss your ideas for Patient and Public Involvement, we'd love to hear from you, please email:
[email protected]