During my years as vice-president of research at the MS Society, I’ve witnessed a change in how people with MS view research and their interest in being part of research. More and more I hear from the community that research is a process that they want to learn more about, and play a role in in terms of how research is conducted, reviewed, and informs health practices and policies.
This led to an important initiative that was lunched three years ago – the engagement of community representatives. I remember sitting in a meeting room with my colleagues, trying to figure out how we were going to involve people with MS, their families and caregivers in the research review process. We decided that we were going to invite them to sit on the review panel, to take part in meaningful conversations about how research dollars should be spent and what type of research would have the greatest impact on their quality of life.
The positive effects of this process became evident very quickly. The scientists and clinicians around the room were given a chance to hear how the research studies they were deliberating would affect the lives of people who live through MS each day. As well, the community representatives offered valuable feedback on how researchers should communicate the goals and impacts of their studies to a lay audience.
Community representatives enrich the research review process by offering a unique perspective that is of paramount importance when trying to determine which research proposals will receive funding from the MS Society. It allows the research community to take a step back and reflect on how the research will not only advance the field, but whether it will bring about meaningful change in the life of a person living with MS.
I encourage anyone who is affected by MS and wants to play a role in the decision-making process for research funding to apply to be a community representative. For more information on eligibility, roles and responsibilities, and how to apply, visit the MS Society website!