Project update: Key insights from our work so far

On Monday, January 27 we gathered in person, meeting in London, to plan the co-design stage of the project. The co-design stage aims to collaboratively develop service interventions from the data that we’ve collected that are relevant and meaningful for people with MS from South Asian and Black British backgrounds. The process will also involve healthcare professionals and MS charity representatives to ensure lots of different perspectives are contributed.

During our meeting, the peer researchers reviewed the study’s research questions and reflected on the themes that emerged from the interviews and focus groups they conducted. To establish priorities for the co-design phase, each peer researcher shared which themes resonated most with them, drawing from their own lived experiences.

Later in the session, the study team and peer researchers discussed key aspects of the co-design stage such as who to to involve, how we can present the data we’ve gathered in an inclusive and sensitive way, and how to set the priorities to address through the process.

The study team and the peer researchers also explored potential challenges, such as power imbalances within the group, and what would be the most suitable strategies to address them effectively.

During our discussions, the peer researchers shared their thoughts on the research training we took part in last year. Karen Chong reflected on how the training impacted her personal growth:


"I really enjoyed the peer researcher training program. It taught me a lot about myself and helped improve my listening skills. That’s been a really valuable personal skill for me. It also made me realize that things aren’t as clear-cut as we thought—it’s not just black and white. There are so many other issues at play."

Francine Parker shared how the training invited her to engage in the research process:


"The training gave me the knowledge and skills I needed to interview others with MS. Doing this research has opened my eyes. Some parts were a little sad because certain things haven’t changed after 28 years. But it’s also been fulfilling, using my brain and feeling like the person I was before I had MS. I used to be a psychologist and a court welfare officer, and this process reminded me that I’m still Francine—not just a mum, not just a grandma, not just someone with MS."

This meeting marked a pivotal step in the project, emphasising both the collaborative nature of the research and the personal growth of the peer researchers involved.