Experts by Experience

This was a note I wrote in response to a Mayo Clinic initiative called “Experts by Experience” which involved collecting patient stories. It was posted on April 27, 2019.

While I heartily applaud this initiative, I take exception to the title “Experts by Experience”. Empowering the patient is important yet, in this age of the democratization of expertise, where anyone with an opinion or access to Google is suddenly an expert in their own mind, legitimizing this notion is dangerous, especially in the world of medicine. You need look no further than on any Facebook group page related to a medical condition or on the healthcare social network Inspire to see the impact.

Experts by experience warn others about the sometimes rare or totally fictitious side effects of the prescribed medications, advising the discontinuation of their use. I believe my legs ache because of the atorvastatin I’m taking and am telling anyone who wants to listen that statins are dangerous, overlooking the fact that I had partial meniscectomies in both knees 10 years ago, I’m 66 years old and I just ran 10km this morning in minimalist shoes. That’s expertise by experience and, if not challenged, erodes valid medical expertise.

As patients stop taking their medications or switch to quack cures, and physicians shy away from prescribing those mired in specious controversy, such expertise is becoming a public health issue. Like the celebrities-cum-experts in the Hollywood Hills who influenced public opinion about the safety of vaccines, experts by experience have the capacity to harm. Opinions do not represent expertise nor does having an experience, no matter how profound and deep, make one an expert.

Sharing patient stories offers opportunities for institutions and the people who work in them to improve healthcare and how, and how well, it is delivered to the public. The term “expert by experience” undermines those goals.

I’m no expert. This is just my opinion.

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