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Guest Blog: ePatient DaveTalks Participatory Medicine.

Today's guest post is from ePatient Dave, who beat stage IV, grade 4 renal cell carcinoma with the help of fantastic doctors, supportive family and friends, and the power of the ePatient movement.  Today, Dave writes at The New Life of e-Patient Dave and he's offered to post here on SUM about the true power of patients online.  (And we, as PWDs, know how important the patient community is!)

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One year ago today I finished reading e-Patients: How they can help us heal healthcare, the ePatient Davee-patient white paper. It turned my head around because although I’d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.

The people who assembled that report (not me) are smart, perceptive, and insightful about the future. When I “synopsized” each chapter in posts on my own blog last summer, here’s what I wrote about chapter 2.

This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.

Remember, I didn’t read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, “How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!” So here we are.

From the introduction:

“John Seely Brown… notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm … We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view… But as Brown discovered, ‘Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.’”

The authors – mostly doctors, remember – said “Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before.”

See what I mean about how this had strong echos for me? They continue:

… many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.

Presenting their findings, they said “We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were ‘anti-astronomer.’” The preliminary conclusions:

1. e-patients have become valuable contributors, and providers should recognize them as such.
“When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”

2. The art of empowering patients is trickier than we thought.
“We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”

3. We have underestimated patients’ ability to provide useful online resources.
Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!

4. We have overestimated the hazards of imperfect online health information.
This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.

    * “[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
    * We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)

5. Whenever possible, healthcare should take place on the patient’s turf.
(Don’t create a new platform they have to visit - take yourself wherever they’re already meeting online.)

6. Clinicians can no longer go it alone.

    * Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberge, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
    * In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift - same for your interest in “participatory medicine.”

7. The most effective way to improve healthcare is to make it more collaborative.
“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”

Great stuff! An awakening for all players in the “ecosystem,” as we say in the business world: patients, providers, equipment developers, everyone.

Wake up to the new world of participatory medicine: equip, enable and empower patient participation.

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I love it - "participatory medicine."  We, as health bloggers, are part of an enormous revolution.  And I'm proud we're all a part of it, from the bloggers to the commenters to the lurkers.

(Note:  This post originally appeared on e-Patients.net.)

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