The E-patient and the Dinosaurs.

Melinda Seed writes for Twice Diabetes

Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.

 

Slide from Dave’s presentation

Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration.

Dave’s story was compelling and his ability to use all resources available to him and to evaluate information and work with his health care providers was, to my mind, the very model of an engaged, intelligent manager of his own health.

Why then did I sense a mild hostility to these suggestions from those audience members who asked questions. I hasten to add the audience were not clinicians but appeared to be mainly employees of health promotion (in its broadest sense) organisations-project managers, health economists, education officers etc.  At times I was thinking, haven’t they listened to a word he’s said.

When Dave put up this slide…It dawned on me, in fact, they hadn’t listened to a word he’d been saying.

Slide from Dave’s presentation

 

Many members of the audience have something to lose if patients become “empowered”.  the gatekeepers of information-those employed by health promotion organisations fear irrelevancy if patients can access resources and evaluate for themselves. THIS is the reason they were asking about how you filter false information on the internet and raising barriers such as lack of health literacy.  Instead of getting irritated as I am wont to do, Dave basically just told them in the gentlest possible way they were dinosaurs on the way to extinction (at this point I realised his story of a former career in the now obsolete world of typesetting was a parable-not just a personal anecdote). Although  I am sure many of the audience members, like one of the women on my table are still pondering how on earth you can protect people from all the false information on the internet and have little idea of they key point of the message.

Dave and Max Planck are of course right, it’s no use trying to win over those who oppose use of social media, peer support and patients included. We should be just getting on with it and waiting for the dinosaurs to die out!

I thought about this in the case of diabetes member organisations (I suspect but can’t  be sure-he was sitting too far away and we weren’t facing the right way, one of those expressing mild hostility was the leader of a local diabetes member organisation). Those organisations who are engaging with people with diabetes and empowering them will go on to thrive, I’m thinking of Danni Foundation particularly but also JDRF and Diabetes Australia (who are thank heavens entering this territory via things like DApeoplesvoice) but my local state diabetes member organisation continues to ignore the voice of the people with diabetes and thus alienates people with diabetes and hastens its decline into irrelevancy.

Long live the empowered patient!

Me & e-patient Dave DeBronkart!

 

PS. Thanks to the Health Informatics Society of Australia who organised this opportunity for everyone to hear from Dave, and also Consumer Health Forum for making me aware of this event. All expenses incurred in attending this event were met by me!

4 thoughts on “The E-patient and the Dinosaurs.

  1. Hey Melinda – thanks – I can’t speak for the specific people you’re talking about, but I do know an ever increasing number of skeptics are starting to see the light. So take heart and “chive on,” as they say.

    Skepticism is a good thing, but what a lot of earnestly skeptical people don’t realize is that they need to apply it just as much to the peer reviewed literature as to the internet. One good place to start, on that subject, is this blog post of mine from 2012, about a former editor of the highly respected New England Journal of Medicine saying:

    It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

    Let that sink in. (And note, if your skeptics say they only trust journal editors, they REALLY need to let it sink in!)

    Some will rationalize by thinking: “Well, one cranky ex-editor doesn’t prove anything.” For them, here’s Richard Horton, the current editor of Lancet:

    “The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue.”

    The bottom line is that the only approach that has intellectual validity is to be careful about everything.

    1. Thanks Dave & I totally agree. You have actually anticipated my follow-up post to this one about evidence & science & medicine. I think be careful about everything AND validate any information that you are going to rely on through multiple sources whenever you can. The T1 diabetes community is one of my really important sources of information about the real life experience of diabetes treatments etc.

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