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Real Talk from Participants

Science from the Patient Perspective: Why Does It Matter?

Man with a landscape in the background.

Dave Iverson hiking on the Olympic Peninsula in Washington state after moderating an event led by MJFF.

The coronavirus pandemic has shined a light on the importance of scientific research and clinical trials. To learn about the patient perspective on this topic, we spoke with Dave Iverson, a founding member of The Michael J. Fox Foundation (MJFF) Patient Council and former science journalist.

MJFF: How did you first become interested in research and clinical trials?

Dave Iverson (DI): There's nothing like a little self-interest to make you change your point of view. After I was diagnosed with Parkinson's in 2004, I suddenly found I had this brand-new interest in neuroscience. Increasing my own scientific literacy has helped me realize how science works — how much time it takes, how much it costs — and understand the latest scientific developments related to Parkinson’s. In the best sense, you can gain an enlightened self-interest that not only applies to your own life, but to the lives of others.

MJFF: Why does research matter to you?

DI: I think when you're diagnosed with something like Parkinson's, you have a stake in research in a different way and you learn that participating in research matters. Once you participate in research, you see it isn't that difficult to do and there are many ways to do it. I've participated in trials that tested the possibility of a medication as well as genetic studies, observational studies and online studies like Fox Insight. It's important to realize that you can participate in research in a lot of different ways.

MJFF: Do you think the pandemic will change the way people look at science or clinical trials?

DI: I hope it changes how we view science and its importance, and I do believe there's an opportunity to create deeper understanding about how science works. I think one of the great challenges of our time is all of us trying to focus on facts and data rather than partisan points of view. And I think of so many things that we've experienced in the Parkinson's world that apply to this. The conditions are completely different, but just starting with the notion that science takes time — to move an idea all the way to a drug that's approved by the FDA, for example, takes years and could cost billions of dollars. Scientists have also tested repurposed drugs for Parkinson’s but none have been successful yet. They could sound great and even have a scientific rationale that makes sense in the lab, but you still must go through the rigors of human trials to determine whether they really work.

MJFF: How has participating in research impacted your personal journey with Parkinson’s disease?

DI: It’s given me an appreciation for how challenging this is and how fortunate we are as a community — meaning people who have Parkinson's or family members with Parkinson's — to have so many smart people dedicating their lives to this cause. And participating in research and the Patient Council has given me a lasting gratitude for that, that I might not have had otherwise. Because it gives you something to believe in, and I think that's a precious thing. To have something you believe in is enormously helpful if you're contending with Parkinson's.

MJFF: What tips do you have for the Parkinson’s community? How can they learn more or get involved?

DI: Fox Trial Finder is an easy way to be matched with research possibilities. And earlier I mentioned Fox Insight, MJFF’s online study. It’s most important to remember to do what you can, and if that’s just filling out Fox Insight surveys, do that. There are lots of ways to participate in research and if each of us does what we feel we can, we'll be that much further ahead in the search for a cure.

Watch a video where Dave talks about participating in research.

Learn more about clinical studies and your role in research.

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