The Patient-Researcher Divide

Eric Downer
Written by
Eric Downer

On World MS Day this year I spent the day at a conference organized by a local National MS Society. I wasn’t there just to give support; I was there to talk about the science behind my research. My presentation was sandwiched between two eminent neurologists outlining information on the latest multiple sclerosis therapies. I was a little nervous to say the least.

You may think a presentation like this would be no problem, a piece of cake, but no. We scientists spend a lot of our time in our comfort zone, presenting our latest scientific research findings at scientific meetings and conferences. These presentations are usually to fellow scientists. We rarely have the opportunity to interact with patients and their families, or friends and colleagues who are also impacted by multiple sclerosis. So today was a rather large step out of my comfort zone. I can count on one hand the number of scientists I know that regularly interact with individuals affected by the disease they spend their lives researching. Why this occurs I am not quite sure.

What I can say is that it is a completely different task explaining the research I carry out on the cellular and molecular mechanisms underlying MS to someone with little or no scientific background. It is a challenge, but challenges are always good, and this is a task more scientists need to undertake. We can read forever about the progression of the disease and symptoms in textbooks and journal papers, but we must talk more to people to understand individual experiences and hence become more informed.

Also, I must admit that I have been a little naïve. Many individuals affected by MS exhaust the literature available on the internet and elsewhere, and their understanding of the disease can often be as rounded as any scientist or clinician that has worked on MS for many years. From time-to-time we scientists need to take some time away from pipetting and harvesting cell lysates in the lab, writing papers and grants at our desks, and spend a day meeting the people impacted by the disease we spend all our time trying to understand.

It’s about time we break down the divide between patients and researchers. We can learn an awful lot from each other.

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