Shaping lab-based research on a new drug- my perspective as a PPI contributor
Nicola Cooper, a patient and public involvement (PPI) volunteer, shares her experience of joining a focus group on lab-based research being carried out by Rachel Hughes at the University of Sheffield.
About the research
Rachel’s PhD project is investigating how a novel drug is having an effect in a specific type of neuron generated from skin cells of people with Parkinson’s. This is a lab-based research project that also involves the use of mouse models.
How have people with Parkinson’s been involved?
Rachel wanted to hear people from the Parkinson’s community’s opinions on her research idea and the use of animal models. Six people from Parkinson’s UK Research Support Network, including Nicola, were invited to join two focus groups. These were held at Rachel’s lab in Sheffield. In the first meeting Rachel shared background information about the research and different types of animal models that are used. In the second meeting, there was a more in-depth look at animal models and time for people to share their opinions.
Nicola is a retired Biomedical Scientist. She was diagnosed with Parkinson’s and became a PPI volunteer because she believes that any research that aims to improve life for people with Parkinson’s should involve people with lived experience of the condition. Here Nicola shares her experience of being involved with Rachel’s project and advice for others who are considering planning or being involved in lab based research.
How did you find the focus group? What went well?
It was really well planned and I felt prepared for the meetings. We were sent some reading material in advance, and we all did our ‘homework’. We also received some material at the end of the first workshop to look at in preparation for the following workshop.
The timing of the meetings really helped to allow for our routines or medication needs. It can take people with Parkinson’s a while to get going first thing in the morning. We didn’t start until 11 o’clock, and when we arrived there was tea and coffee provided — so there wasn’t too much getting up at the crack of dawn trying to get ready and our heads into the right space. The researchers were aware in advance that we might have medication timers going off and had built in breaks too.
The opportunity to meet other people was a positive part of the meetings. It was really nice to meet the researchers and to learn more about what they were doing in the laboratory. At the second meeting researchers from the pharmaceutical company (who are making the drugs for the research project) were also present. That was interesting for us but also for them to meet people with Parkinson’s and to meet the lab researchers that they were providing drugs for. We all got a chance to chat to the researchers during the lunch break. It meant we could actually get to know them a bit more as people.
Do you have any advice for researchers planning PPI activities?
I’d encourage researchers to try to involve people with a range of experiences of the condition they’re studying. Having people with different backgrounds and ages in a group is useful.
I suspect that it would be quite easy to invite the same group of people over and over again. I would love to be involved over and over again, but I think it’s important to get a variety of people involved. Especially as this provides an opportunity to communicate the research to a wider group of people- spreading the joy is a good idea!
Coordinating with charities is a good approach because they often have a group of people that they can contact.
Do you have any advice for anyone planning on getting involved in research?
I would encourage people to go at it with an open mind. I think especially for Parkinson’s, because it’s such a long lived condition, some people can become quite discouraged by research. It can help to approach it from an interest point of view. And to remember that I can help scientists to understand a bit more about how I live, what sort of a person I am and how this is going to affect me in general.
Do you think your contribution had an impact on the research or the researchers?
I think we helped the researchers to have a greater understanding of Parkinson’s and what it is like to live with the condition. Two of the researchers hadn’t had a chance to meet people with Parkinson’s before. It can be difficult for people to understand that people with Parkinson’s can be quite different — different symptoms, different experiences, different ages.
We also shared our perspective on the researchers’ ideas and the research approach. One of the questions they had was whether or not we would like them to use animal models or cell lines in the research. We all had different views about how animals are used in research. Once we’d had a discussion we could all see that sometimes using animal models is valuable, but sometimes it wouldn’t be as valuable because the systems of the animals don’t necessarily reflect the systems in humans. I think that talking about things that are quite emotive was an interesting part of the meeting.
I was a microbiologist in the NHS for most of my career. I think the fact that I can provide a bit of a scientific background but also give them an idea of what it’s like to live with Parkinson’s in the real world is really valuable.
Read about Rachel’s experience of PPI and the impact of the focus group here.
With thanks to Nicola and to Michelle Tong and Involvement Steering Group members Eric Deeson, Ellen Poliakoff and Gillian Granville for their guidance and input for this blog.
