Research interests: Using in vitro and animal models to understand the role of mitochondria and their therapeutic potential in Parkinson’s.
More info: https://twitter.com/rachelmhughes1
About the research
This project will investigate how a novel drug is having an effect in a specific type of neurone, generated from skin cells of patients with Parkinson’s. The research will involve the use of mice. This is a PhD project.
Funding is from the Medical Research Council and an industrial collaborator. Funding for PPI is from Parkinson’s UK.
Preparing for PPI
Rachel’s supervisor suggested she involve patients and carers in this project. Rachel had to do a Doctoral Development Programme as part of her PhD. Within this, she chose to include PPI and science communication.
Rachel was awarded a Parkinson's UK Research Involvement Award to enable her to involve people with Parkinson’s in her research. Parkinson’s UK supports a network of people affected by Parkinson’s who are interested in being actively involved in research. All have been offered training about research and about involvement in research. Six people from the Network were recruited to take part in two discussion groups at Rachel’s lab.
Planning for PPI
Before each discussion group Rachel spent time preparing pre-reading, which was checked by staff at Parkinson’s UK to ensure it was in plain English. At the end of the first meeting, Rachel gave people a booklet to summarise the information she had shared and to help people prepare for the next meeting. View the booklet here.
She also planned her presentations carefully, and sought help from her supervisor about what to expect and what she should and shouldn’t say. “It was the first time I’d done any involvement. I had a meeting with my supervisor beforehand and she gave me advice about things to say, like you say ‘Parkinson’s’ or ‘people with Parkinson’s’ instead of ‘Parkinson’s disease’, because people with Parkinson’s don’t see it as a disease. Little things like that were helpful.”
Preparing the presentations took time. “You need to make sure that you are pitching presentations at the correct level. It isn't something that should be viewed as a 5-10 minute task. Just because it is a lay presentation doesn't mean it should be rushed. It was time consuming but definitely worth it!”
The PPI activity
Rachel felt that both discussion groups went well. “They were led by myself and a third year PhD student, with support from Parkinson’s UK. At the first one, we gave background about our research and a brief overview of the different animal models. The second one, two months later, was a more in-depth look at animal models and then we sought people’s opinions.” View an agenda from the second meeting here.
The same six people attended both discussion groups. “That felt like the right number. It was small enough that we could stop and have conversations, and at lunchtime we could get to know people a bit.”
“It was quite an informal atmosphere – if people wanted to interrupt our presentations partway through to ask questions, that was absolutely fine. Our industrial collaborator came to the second meeting, which went down really well with the participants.”
Impact
PPI helped bring Rachel closer to the people who she hopes might ultimately benefit from her research. She found this motivating. “As a researcher, you can spend hours in the lab focusing on one small part of the disease and almost forget why you’re doing it. So I think meeting people with Parkinson's and their families really helps you to remember why you’re doing it.” “
The involvement may also influence the direction of Rachel’s research in future: “For this project, PPI didn’t have a massive impact, because the protocol has already been agreed. But I think it would make me consider different options further down the line. Patients told us that they would much rather see us doing work in the patients’ cells than necessarily a lot of animal work.”
Follow up
Rachel is interested in continuing the involvement after the second meeting. “I’d be interested to set up a small group, maybe two or three people who I could meet with every few months during the course of my project. A small group would work best because of time.”
Nicola was one of the people who joined the discussion groups, find out more about her experience of being involved with Rachel’s project and advice for others who are considering planning or being involved in lab based research.