Shaping research to develop biomarkers- our perspective as PPI contributors
People with Parkinson’s, their partners and family members play an important role in identifying and prioritising research questions and shaping research projects. Tony Vernon, a researcher at King’s College London, asked members of the Parkinson’s community to share their thoughts on his research plans. We spoke to Patient and Public Involvement (PPI) contributors Olive and Rod about their experience of being involved in this lab-based research project.
About Tony’s research
Detecting Parkinson’s early and understanding how it progresses for an individual is important as it can help in planning the management and treatment of the condition.
Tony’s study aims to develop a test that can identify specific biological characteristics in the brain that are linked to Parkinson’s as early as possible. Tony’s research is focusing on detecting the loss of synapses (the connections between brain cells that allow them to communicate and regulate movement). To do this he is searching for brain imaging biomarkers — a change in the brain that can be measured with a specific form of neuroimaging- called positron emission tomography (PET) — which may be linked to the onset and progression of Parkinson’s
Tony and his colleagues are using animal models with Parkinson’s-like symptoms to better understand the potential of one possible PET biomarker ( called SV2A) to follow the onset and progression of Parkinson’s.
How have people with Parkinson’s been involved?
Tony was planning to submit a grant application and wanted to seek the views of people with Parkinson’s on the topic of the project. Parkinson’s UK supported Tony to connect with patient and public involvement volunteers to discuss his research. Six people were recruited to take part in two discussion groups. The first took place online via Zoom and the second was at Tony’s lab.
Olive was diagnosed with Parkinson’s in 2013. She and her partner Rod became patient and public involvement volunteers because they were interested in sharing their experience of Parkinson’s to help find better treatments. Here, Olive and Rod share their reflections on being involved in Tony’s project and how people affected by Parkinson’s can make meaningful contributions to lab-based research.
How did you feel the discussion group went?
Rod: I felt it went incredibly well. One of the key factors that contributed to this was that Tony and Frank (a member of the research team) were very down to earth, they respected the audience. After Tony and Frank presented their research plans, there was time for feedback and questions. Any depth we wanted to go to, they were happy to discuss. For me, being shown around the laboratory added to the experience. I thought it was great fun.
It was a good opportunity to learn more about Parkinson’s research. I find the research fascinating. They were quite happy to explain the real detail of what they were doing — you realise it’s really cutting edge science.
Olive: I found it extremely interesting and Tony and Frank didn’t talk down to anybody.
Were there any challenges to being involved in a discussion group about lab-based research?
Olive: Lab-based research projects can focus on some complex and unfamiliar topics. Because of this people might question why they should get involved with lab-based research, but we can bring different experiences. I could talk about symptoms -we can offer that different perspective of Parkinson’s.
It is important that the information is communicated clearly. If it gets too complicated it can be a waste of time.
Rod: We had a lot of questions and so it was easy to get side-tracked quite early on in answering questions that we were interested in. But having time for questions was important. We ask questions because we think about it slightly differently and it helps the researchers to understand the project from different viewpoints.
Do you have any advice for researchers planning discussion groups?
Rod: It’s good to meet the scientists and for me it’s more productive to meet face-to-face. But teleconferencing is also good, especially during the pandemic. Maybe a mixture of formats is a good approach.
Olive: The distance to travel or frequency of meetings might help choose the format. For me face-to-face is not a problem if it’s every few months. Another consideration is how many people to involve. I’m quite happy to sit and listen and take it all in and then make comments, whereas other people can start chatting and asking questions straight away.
Rod: Some people are quieter than others, so it’s better to have a smaller group to allow for more in depth conversations. But it’s not just about the number of people, it’s how you run the meeting. It’s important for the host to ask for people’s views and bring people into the discussion.
Do you think your contribution had an impact on the research or the researchers?
Rod: Whenever people get together there is always something that both sides will get from it. PPI contributors may come away with an understanding of what the researchers are trying to do and that it takes a lot of money and effort to answer these questions. You don’t have to understand the details of the science in order to benefit.
Olive was a teacher and I was a research scientist, but in a totally different area. So we can listen to people and comment, but we’re not experts in this research. But by understanding what the researchers are trying to do, because of my background and experience, I can ask why are they doing this? Or is this interesting for people with Parkinson’s?
For researchers it can be motivating to meet people living with Parkinson’s and understand more about living with the condition, what the challenges may be and how their research could help.
If you’re going to start projects, including lab based research, it’s good to have discussion up front to make sure that what you’re doing is worth doing for people with the condition.
Read about Tony’s perspective of the discussion groups here.
With thanks to Olive and Rod and to Michelle Tong and Involvement Steering Group members Eric Deeson, Ellen Poliakoff and Gillian Granville for their guidance and input for this blog.
