Expertise by Opinion

The patient as expert or, as the Mayo Clinic has taken to label it, “experts by experience”, is a step onto a slippery slope. While empowering the patient is important, 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 to see the impact.

On social media outlets such as YouTube, Instagram, TikTok, and Facebook, experts by experience warn others about the sometimes rare or totally spurious side effects of prescribed medications, advising the discontinuation of their use based solely on their personal experience and anecdotes, and often supported by cherry-picked research findings, more often gleaned from social media content pieces than from the original journal articles. I believe my legs ache today because of the atorvastatin I’ve been taking for 9 years and am telling anyone who wants to listen that statins are dangerous, overlooking the fact that I had partial meniscectomies in both knees 15 years ago, I’m 69 years old and I just ran 10km this morning in zero-drop shoes. Expertise by experience, if not challenged, helps erode confidence in valid medical expertise and advice. And misinformation travels faster than facts (The 2nd Law of Social Media).

When a randomized controlled research trial concludes statins do not contribute to muscle weakness and pain, that does not mean that statins are not associated with muscle weakness and pain for some people, it simply means statins cause no more weakness and pain than does a sugar pill (or placebo) for most people. Averages are about most people, not any one individual.

As patients stop taking their medications or switch to unproven or quack cures, and physicians shy away from prescribing those medications mired in specious controversy, this perversion of 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 in anything but one’s own perceptions and feelings about their experience. My current feeling of frustration does not make me an expert in your or anyone else’s frustration. Yet my personal experience with bisoprolol does? Meh.

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