Representing the public voice

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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!

4 thoughts on “Representing the public voice

  1. Lelainia Lloyd

    I can’t say enough good things about how being a part of this process has informed and impacted how I think about how MS research dollars are spent. Sitting at that table listening to the deliberation over each and every application and the passion of those presenting was amazing. I wish every person living with MS, their loved ones, those who raise the money going towards the funding of research and all corporate donors and partners could have some small taste of what that’s like. I am so incredibly proud of the work being done to ensure the process is fair and that those research dollars are being used in the most effective ways possible.

    I have been so grateful for the opportunity to represent the MS and NMO communities, to work along side so many amazing researchers and clinicians and to grow in ways I never envisioned. It’s been a gift, truly. So many aspects of living with MS and NMO are out of our control and yet, when we sit at the table and help weigh in on the decisions that will directly affect our future and the future of so many of our fellow Canadians, we take ownership over these diseases in a very powerful way.

    Reply
    1. drkarenlee Post author

      Hi Lelainia,

      Thank you for your encouraging words, and for being such a strong and inspiring ambassador for the NMO and MS communities. Providing a conduit for people living with MS and NMO to meaningfully participate in the research process at all stages – whether it’s informing the design of new funding opportunities and research studies, reviewing applications for impact and clarity, or participating directly in a research study – is a top priority for the MS Society, and we are continuing to develop new opportunities for public engagement.

      Dr. K

      Reply
  2. Doreen Graham

    Reading your research section for Hematopoietic Stem Cell and Dr. Burt from Chicago was mentioned for his study. Why is there nothing about Dr. Freeman from Ottawa mentioned. We should be receiving information about Canada’s studies, not promoting the USA.

    Reply

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