Bringing the power of patients to research

You are working on a research project to help people with multiple sclerosis, or MS, tell us more
I am a researcher on a project led by Dr Sinéad Hynes in NUI Galway. We are evaluating a cognitive occupation-based programme, where people with MS learn about strategies such as setting goals and planning their days to pace themselves.

We want to see if the programme helps to reduce the impact of factors such as cognitive challenges and cognitive fatigue in their day-to-day lives. The study is funded by the Health Research Board, and one of the stipulations was that there would be patient involvement, they are very strong on that. NUIG advertised for a person with MS to get involved in the research, and I applied and got the job in 2019.

How have your insights as a person with MS helped the research?
I had a big influence in designing the booklet that study participants use to learn about the cognitive techniques. From the binding to the texture of the paper to the font size, I could ensure that the booklet would be something that people with MS could and would use. I also helped to encourage people to take part in the study through my own network and doing media about my experience of MS.

More recently I have had the privilege of interviewing participants after they complete the programme in the study. One of the participants postponed the call for a couple of days because she was feeling too tired. She told me afterwards that she felt comfortable doing that because she knew I had MS and that I would understand, and it led to her being able to give a better quality interview. That really made me think about the importance of patients being part of the research team.

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Did you have a background in research before starting to work on this project?
None at all. My background is in business. I have a B Comm from NUIG and I had been training to be a chartered accountant in London 30 years ago when I was diagnosed with MS. After that I worked in various roles, including setting up a coffee distribution company, running a Connemara marble factory and working in market research. The planning and interpersonal skills I developed from the management roles are very transferable to my role as a patient researcher and advocate.

What keeps you going in the work?
From a mental health point of view, being involved in patient advocacy and research is extremely positive, there is a real sense of purpose in it. Also, when I get up in the morning I am not focused on a pain in my leg or that I can't move very much. Instead I am thinking that I need to write a lay summary, or whatever task I need to do for the project. The pain and mobility issues are still there, but they take second place.

What's next for you as a patient researcher?
Things have really taken off recently. We are putting in a grant application for a larger trial of the MS intervention and I am a co-applicant on that. I am also working with the Health Research Board on its annual conference and the HSE has invited me to engage with them about how research is managed and supported. To go from not being involved in research at all a few years ago to being a published researcher and shaping how patients can be involved in research, I can barely believe it.

Details of the cognitive occupation-based programme for people with multiple sclerosis (COB-MS) is available at cob-ms.com/

Robert shares his experience of living with chronic illness, such as multiple sclerosis, asthma, sarcoidosis and chronic pain at:https://a30minutelife.com/