Making it easier to have your say in MS research
Heather Mah is a PhD student at Queen Mary University of London. She is researching how people are involved in MS research. She won our writing competition for researchers with this article about her work.
It’s important to involve patients and the public in shaping research. It can help make sure studies meet the needs of the people who benefit from the research. For people affected by MS, this means sharing their experiences so researchers can understand more about what it’s like to have MS. This is known as ‘patient and public involvement’ (PPI).
While PPI can help make research better, I’ve found it can be hard for people with MS to take part. So I’m doing a PhD looking at PPI in MS research. I want to know what the experience of doing PPI is like for people with MS, research staff and PPI coordinators.
The challenges of doing PPI
Accessibility isn’t just about physical spaces. People with MS told me about a range of things that made PPI hard to do. First was finding out about the opportunities. Many were not widely advertised, as researchers often asked the same people they already worked with or posted on social media. This means the experiences of some people with MS may not be reflected in research.
People with MS said their invisible symptoms, like fatigue, brain fog, and difficulty remembering words, could make it hard to talk at meetings. Sometimes meetings were long, used complicated scientific language, or were held at the end of the day.
Researchers told me how difficult it was to find accessible spaces for meetings, especially with small budgets. Rooms needed to be close to public transport, with accessible toilets, a lift and big enough to fit everyone and their mobility aids. Online meetings have made it easier for people to come together and talk about research without having to travel. But people with MS and research staff said they missed seeing each other in person. Chatting before and after meetings helped them to get to know each other better.
The emotional impact
Both people with MS and researchers found doing PPI could sometimes be emotionally difficult. For some people with MS, it took several years to accept their diagnosis. They didn’t feel ready to get involved in research when they were first diagnosed. Others spoke about how some discussions could be upsetting, like how MS can get worse, because this reminded them about their own health. Staff delivering PPI found discussing certain topics difficult and worried about the wellbeing of their PPI advisers. We need to recognise how it can be emotionally and physically demanding for everyone involved.
Why this research matters
PPI has the potential to improve MS research by involving people with MS in its design. But we need to address the access challenges that can limit how people can get involved.
PPI activities need to be flexible, understandable, and responsive to people’s needs. For example, including people new to PPI, providing breaks and support around difficult topics. This way, people with MS can feel comfortable sharing their experiences. And research can reflect the true needs of the MS community.
I'd like to thank all the participants who shared their experiences and the Horne Family Foundation for funding this PhD.
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