When Patients Partner with Researchers: Kevin’s Perspective

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ADAPTABLE patient partner, Kevin Edgley, shares how he became involved in ADAPTABLE and why this study and patient-centered research is important.

“As an engineer I’ve always enjoyed working with customers, it was obvious early on that the people we sell the equipment to and who use it every day, know more in some ways than the engineers who design it. It is always humbling to talk with customers because they can be frank about what they like and do not like– this has been very constructive for me in my career. This experience as an Adaptor is similar in this respect — it is different and valuable.”

How did you get involved in patient-centered research?

I was sitting at home one night and my cardiologist called me. A little frightening….!  He mentioned the study and asked if I would participate, and I said yes. Half of my life I have been involved in research and development (from a mechanical engineering perspective), and while this is very different, the principles are similar. My interests and history appeals to this type of work.

Why do you think the ADAPTABLE study is important?

I do not have a whole lot of experiences to compare this to in terms of medical research. From what I know, getting the voice of the patient in a study is important as opposed to a bunch of academic professionals making assumptions. This is a unique and important opportunity!

What do you enjoy most from your involvement in the ADAPTABLE study?

I have enjoyed doing something different and separate from my own profession and thinking about research differently. Adaptable has been a great change of pace for me. I enjoy the interaction with the other Adaptors and hearing their different points of view that I would not normally consider on my own. As an engineer I’ve always enjoyed working with customers, it was obvious early on that the people we sell the equipment to and who use it every day, know more in some ways  than the engineers who design it. It is always humbling to talk with customers because they can be frank about what they like and do not like– this has been very constructive for me in my career. This experience as an Adaptor is similar in this respect — it is different and valuable.

Why is patient-centered research important?

I think patient centered approach is important and communication to the public is one of the most difficult things to do. When I mention this project to people, they are surprised. To the public this question about aspirin dose is an already a closed case. It is ingrained that 81 mg is the right way to go! People are not always willing to consider there may be another answer.

The way studies are presented in mainstream news is almost a joke. The say coffee is good for you one year and the next year it is bad for you! I’m not sure the general public (which I am more a member of) takes these findings seriously, and sometimes study results are discounted since you get so much conflicting information.

The public does not read medical journals or in-depth study results, we need to think about ways to share research back that is not conflicting and incorporates the patient perspective.

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