Participatory medicine and evidence from medical journals

I’ve only been studying healthcare for two years and I hesitate to be overly assertive.

But I have, finally, reached the point where I feel confident in citing cases where people are simply being unscientific: ignoring evidence. That’s always hazardous, and it becomes insidious when it’s caused by a blind, unquestioning belief in our institutions.

Case in point:

Julie Thoren is an active practitioner of Participatory Medicine who’s seen first-hand the tremendous value informed e-patients share with each other. This morning she wrote to me about a post, How online patient communities make money from patient data, on KevinMD.com, a neighbor of mine in Nashua NH.

Kevin pointed out, correctly, that patients need to have their eyes open about what might be done with their data, etc. Commenter “Doc D” cited the chestnut “The plural of anecdote is not data,” and Julie responded about Participatory Medicine and the value she’s found in online communities.

Here’s my comment (with a few edits), reflecting on the realities I’ve personally seen and what others have written in JoPM (the Journal of Participatory Medicine):

This is a complex and multidimensional subject. I couldn’t agree more with Kevin’s basic assertion that patients need to be on guard.

On the other hand, I know first-hand (and second-hand many times over) that Julie’s got her facts straight that many many many patients have suffered at length because they presumed the right/smart thing to do was whatever their physician told them, and who only learned of other options – sometimes life-altering – from an online patient community.

Patients and caregivers (and, I’d assert, physicians and insurers and policy people) simply need to wise up about the difficulty and skills and knowledge and risks that health and healthcare involve. In my view, only when someone realizes all of that, can they make truly informed decisions without blinders on or their head in the sand. JoPM editorial board member Trisha Torrey has written a well documented book about this: You Bet Your Life: Ten Mistakes Every Patient Makes / How to fix them to get the health care you deserve.

Those are not imaginary stories – including her own, where the physicians, in whom she of course had faith, told her she had six months to live due to inoperable cancer, when in fact she didn’t have cancer at all, and she only found it out through her own research.

I couldn’t agree more with Doc D that the plural of anecdote is not data. Any patient community that doesn’t understand this is being unscientific. On the other hand, it’s equally unscientific to think that our established channels are reliable sources of information – especially to think they’re the only reliable source. I won’t take time here to go into that in depth, but I’ll quote this from the Journal of Participatory Medicine:

“…evidence on the upside of peer review is sparse, while evidence on the downside is abundant. We struggle to find convincing evidence of its benefit, but we know that it is slow, expensive, largely a lottery, poor at detecting error, ineffective at diagnosing fraud, biased, and prone to abuse … most of what appears in peer-reviewed journals is scientifically weak.”

Was that said by an angry disillusioned patient, mad at publications like the British Medical Journal? Why no, it was written by Richard Smith, after 25 years as editor of the British Medical Journal.

Then we have the recent news that the PatientsLikeMe community beat Lancet to the punch, by a long shot, regarding lithium, after a peer reviewed journal had published a ludicrously inept paper (contradicted by both PLM and Lancet).

No smart patient will unthinkingly trust a patient community (nor a physician), online or off. We all need to wise up and be smart consumers. And based on Smith’s writing, I assert that no smart physician or consumer will unthinkingly trust evidence from medical journals.

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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