What’s next?
As the MS Peer Research Study comes to an end, peer researchers took time to reflect on what being involved in the project has meant to them. Their reflections speak not only to the value of lived experience in research but also to the relationships, learning, and confidence that they developed over the past two years.
Peer researcher Lauren Hopkins said that the project was a journey of skill-building and shifting perspectives. She reflected on how being involved helped her see research differently and gave her the tools that she plans to carry forward into future work:
“I’ve actually learned a new skill: disseminating information and seeing things through the lens of a researcher as opposed to a researcher. It’s been an absolute pleasure and a blessing to meet all of you.”
Lauren also spoke about the impact of the work beyond the project itself and expressed her confidence that the research is already making a difference by saying, “I don’t think it’s a hope. I know that this is already changing the landscape, which is what we wanted.”
For peer researcher Karen Chong, a key part of the experience was feeling supported without being controlled. She reflected on how being trusted to shape the research made her engagement more meaningful: “You [the study team] really helped us understand what we were supposed to be doing, but you still allowed it to flow naturally. You didn’t control the situation at all, and I think that made such a difference.”
Karen also spoke about how the process changed her personally and resulted in some self-learning that has helped her in so many way particularly in how she listens to others and values shared understanding: “I’ve learned a lot about myself… about listening. If you listen for a moment, you’ll find that those ideas are the same as yours, just said differently.”
She also spoke proudly about the outputs of the project and their lasting relevance:
“The papers we’ve produced are timeless. You’re not going to look at them in five years and think they’re out of date …It’s about making things better for the user.”
Peer researcher Saf Hussain reflected on the wider social and political context in which this research sits, and the importance of inclusion at a time when conversations about difference can feel difficult. He emphasised that the recommendations are not about people with MS from ethnically minoritised backgrounds asking for ‘special treatment’, but about fairness: “What we’re saying isn’t demanding things just for us. It’s something that could be rolled out for other people as well to treat everybody equally and be more inclusive.”
Saf also spoke about the hope that the project will have a lasting impact beyond those directly involved: “I hope we’ve planted a few seeds along the way… and that things will be better for the next generation of people [with MS] who are going to be living with this.”
For peer researcher Ashley Black, the project was about learning from others and contributing to something with a clear purpose. He reflected on how hearing different experiences of MS helped deepen his understanding: “I’ve learned a lot about researching and about other people’s experiences of MS. I really like the cause… Trying to make things better.”
Ashley also shared how important it was to feel welcomed and valued as part of the group: “It’s been really awesome working with you all. You’ve all made me feel really welcome, and I’m going to miss it.”
Across these reflections, peer researchers spoke about pride in what they achieved together and confidence that the work will continue to matter. The project created space for learning, honesty, and mutual respect, while keeping a clear focus on improving experiences for people living with MS. As these final reflections show, the value of the work lies not only in the findings and recommendations, but in the shared collaboration and the relationships that made everything possible.