People-powered research: the impact of patient and public involvement

6 min readNov 12, 2019

People affected by Parkinson’s have a vital role to play in shaping research. Over the last few years, we have been building a world-leading programme to bring researchers and people affected by the condition together to improve Parkinson’s research. Through this blog series — titled ‘people-powered research’ — we share what we’ve been working on and how it’s changing Parkinson’s research for the better. In our first post, we explore the development of our patient and public involvement programme.

Developing an involvement programme

Patient and public involvement (PPI) in research is when research is carried out ‘with’ or ‘by’ people affected by health conditions and members of the public, rather than ‘to’, ‘about’ or ‘for’ them (INVOLVE definition). It means patients and the public having a say in research — for instance helping to decide what research gets funded and how it is carried out, and helping ensure that findings are shared with the whole Parkinson’s community.

At Parkinson’s UK, Lay Grant Reviewers have been helping us decide which research projects to fund for over 20 years. We saw that people affected by the condition have a powerful role to play in research, and knew we needed to develop more ways for people to be involved.

So, in partnership with people affected by Parkinson’s, we started a dedicated programme to support researchers and people affected by Parkinson’s to work together.

We began building our network of ‘PPI contributors’ — people with Parkinson’s, family members and carers with a specific interest in working with researchers — and developed training to help them with their role.

The training and support we offer is highly valued by people affected by Parkinson’s and researchers.

Our approach to involvement

We introduced a process to connect researchers with people affected by Parkinson’s, and developed support and guidance for researchers to help them work with PPI groups effectively. Our support is highly valued by researchers.

Since 2015, we have supported over 200 opportunities for researchers and people affected by Parkinson’s to work together. And these partnerships have had a powerful impact on Parkinson’s research.

How does involvement make a difference to research?

Demonstrating the impact of involvement isn’t straight-forward — there is no ‘one-size-fits-all’ approach and the outcomes can be unexpected.

However, gathering feedback from researchers and people affected by Parkinson’s, we have been able to measure some of the ways involvement is making a real difference.

Impact on researchers

We ask all researchers we support to complete a survey to reflect on their experience of patient and public involvement.

The impact of involvement is wide ranging (feedback from 97 researchers):

Many researchers said that working with people affected by Parkinson’s enabled them to see their research in a different light. It gave them new insights — including changes to specific parts of a study as well as broader transformations.

It’s great to see that so many researchers find working with people affected by Parkinson’s motivating, especially considering that the majority of the opportunities we share don’t involve face-to-face meetings.

Researchers told us that the process of involving people is made simple with the support of Parkinson’s UK. Some researchers reflect on how they would involve people differently in the future, with many considering how they could increase the involvement activities in their work and involve people at an earlier stage.

Researchers have a deep understanding of the scientific aspects of Parkinson’s through their work. But working with people affected by the condition helps them become more aware of what it is like to live with Parkinson’s day-to-day.

Overall, working with people affected by Parkinson’s has been extremely positive for researchers:

Impact on people affected by Parkinson’s

We regularly gather feedback from patient and public involvement contributors — after they have been involved in specific opportunities and throughout their role with us.

People affected by Parkinson’s tell us that they want to contribute to the development of new and better treatments. Receiving feedback about how their suggestions have helped shape research makes them feel valued.

The PPI role also gives people affected by Parkinson’s an opportunity to learn about Parkinson’s research and develop their skills, such as communicating complex language in plain English and reviewing study documents.

For some people affected by Parkinson’s, being involved in research helps them to manage some of the symptoms associated with Parkinson’s and gives them another way of coping with the condition.

Our focus for the future

Over the last 5 years we have seen our patient and public involvement programme grow from strength to strength. Our network of people affected by Parkinson’s who are interested in helping to shape research has continued to grow and we have supported researchers to involve people in new and innovative ways. But we know that there is still more to do.

We hope to continue to develop our programme so that we see people affected by Parkinson’s being more actively involved in lab-based research. Around half of the researchers we have supported with PPI are lab-based, with most working with people affected by Parkinson’s to write their plain English summaries for grant applications. We’re currently working on a project to better understand how to support involvement at other stages of research. In the coming months, we’ll also be adapting our researcher training to make sure that it’s appropriate for lab-based, as well as clinical, researchers.

We want to reach a more diverse population of people affected by Parkinson’s too, so that the voices that help to shape research are reflective of everyone in the Parkinson’s community.

By working together, we can ensure that Parkinson’s research is relevant and meaningful for everyone with the condition.

Want more information?

For researchers
To find advice and guidance on how you can involve people affected by Parkinson’s in your research visit our website — parkinsons.org.uk/research/patient-and-public-involvement-ppi

For people affected by Parkinson’s
If you would like to share your views and experiences to help shape research, visit our website to find out how you can get involved — parkinsons.org.uk/research/volunteer-help-shape-research