The benefits of carrying out patient and public involvement (PPI) activities in clinical research have been shown time and time again. People affected by health conditions bring a unique perspective to the design of research studies. Their insights are likely to make it easier and more practical for future participants, thus improving recruitment and retention, which are major challenges for clinical trials.
The case for involving people in research that will not have people taking part is less clear. These stages of research are sometimes referred to as basic research, lab-based research or pre-clinical research. We’ll refer to it as pre-clinical research in this blog, but we’re interested in the first two sections of the research pipeline (see image below).
Studying people with and without Parkinson’s is helping us to understand the condition and how it progresses. But even with improvements in brain scanning techniques, we cannot see what is going on inside the brain in enough detail.
Pre-clinical research helps us to understand more about the condition and provide us with the fundamental knowledge needed to develop new and better treatments. There are many different kinds of pre-clinical research, for example research using donated brain tissue, cells and animal models.
We’re working on a project, alongside the Alzheimer’s Society and University College London Hospitals, to test different ways of implementing PPI in pre-clinical research projects. We’ll be evaluating what works well, the role contributors can play and what support contributors and researchers need.
Before starting this project, we conducted a survey to get an understanding of what researchers and PPI contributors believe are the challenges and benefits of involvement in pre-clinical research. Below are some key takeaways from the survey results.
People want to be involved in pre-clinical research, but recognise that it can be a challenge
Of the 76 PPI contributors who responded to the survey, 43 had been involved in pre-clinical research in some way before. We asked how they found being involved, and their answers fit into two broad categories.
Interesting and rewarding
“A very satisfying experience as I feel I am making a difference to the research process. All the researchers I had communication with (either online or in person) were receptive and appreciative of my contribution.”
“It is more difficult, but the researchers still need to keep in mind who will benefit. I was able to help there!”
“It was more difficult that clinical or applied research — those conducting the study could not see a place for PPI.”
We asked those that had not been involved in pre-clinical research before what had stopped them from doing so. The most common answer was not seeing opportunities to be involved in pre-clinical research.
- I’m not interested in contributing to pre-clinical research
- I don’t understand what pre-clinical research is
- I don’t feel confident working with pre-clinical researchers
Both researchers and contributors recognise that PPI can help communication in pre-clinical research
We asked researchers and PPI contributors where in the pre-clinical research cycle they felt PPI could be beneficial and add value.
The responses focused on the communications aspect of research — both at the early stages of writing grant applications and at the final dissemination stages. So, we’re all agreed that PPI could improve how researchers share information about their work.
But what about the design of pre-clinical research? Only three of the researchers that responded to our survey had involved people in the design phase.
We need to build up case studies and evidence of impact
Researchers told us that case studies and success stories of PPI would encourage them to do it themselves. We’ve heard some brilliant examples of pre-clinical researchers working with people affected by Parkinson’s, and the profound impact it has had on them and their research. We need to shout about the benefits more!
Involvement can start small
Researchers who completed the survey told us that some of the biggest challenges of involving people in pre-clinical research are not knowing where to start and struggling to see where PPI can add value.
Holding a focus group meeting, setting up a steering group, or co-applying for grants may seem intimidating to a researcher who has never worked with people affected by Parkinson’s. But involvement can start with something small, such as a conversation with a local group, and build into something more.
We’re using the results of the survey to help us plan the PPI activities in our pilot projects. We’re also keen to see if we can address any of the challenges and barriers identified in the survey. We hope to have some findings from this project to share by the end of the year.
In the meantime, if you’re a researcher wanting to involve people affected by Parkinson’s in your work, or someone affected by Parkinson’s interested in becoming a PPI contributor, get in touch with us at firstname.lastname@example.org.