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e-Patient Dave deBronkart

Change Advocate for Participatory Medicine / Let Patients Help, Society for Participatory Medicine

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"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

"e-Patient Dave" deBronkart is an advocate for patients being "E": empowered, engaged in their care, equipped, enabled, educated, etc. As described in his talk from TEDx Maastricht, he beat a near-fatal cancer, supplementing his great medical care by using the internet in every way possible.

Today, as blog manager and volunteer co-chair of the Society for Participatory Medicine, he has studied the social, technical and sometimes political factors that make healthcare ignore the potential of patients contributing to their care.

In his TEDTalk, he quotes senior physicians who have said for decades that patients are the most under-utilized resource in healthcare.

Why is that? How did it get to be that way? Is change valid? Why now, and not 20 years ago? And what can we do about it?

Watch the talk, and come back to discuss. *Your family* will be affected someday.

ADMIN EDIT: e-Patient Dave has requested that we keep this conversation open for 1 week. After 2pm ET July 27, he will periodically check in to answer questions and respond to comments.

Topics: Healthcare
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    Aug 1 2011: So, let me guess .... you're in favor of this "Let Patients Help" thing, yes? :-)

    IMPORTANT: people should note that Vera's words don't mention the internet. BEING AN ENGAGED, EMPOWERED PATIENT IS A SEPARATE ISSUE from whether you're online. Lots of online people are disempowered wimps, who don't engage in their care.

    Let Patients Help sometimes involves the internet but the internet isn't the point. The point is being engaged in your care.

    Good for you.
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      Aug 1 2011: Totally in favor of it, Dave. Back then, my insistence on engaging in the treatment of my own terminal diagnosis was considered radical by traditional oncologists and surgeons.In the first few weeks of me interviewing my future team, several turned me down, flatly insisting it was not my place as a patient to have any choice in my treatment, period.

      When my team was finally assembled, we had 5 weeks to save my life. As the journey and treatment progressed, I had to accompany every visit, surgery, etc. with a legal document from my attorney just to obtain MY MEDICAL RECORDS; about me and paid for by me. And thank heavens I did.

      On several occasions my records were either incomplete or inaccurate. I would have them corrected immediately.

      I ended up carrying around two 6 inch leather notebooks, full of records, test results, and data to each of my 12-15 appointments every week. I believe my insistence on my patient involvement was integral to having all the physicians and practitioners make better and more informed decisions about my treatment.

      And essentially, the creation of my own "survival roundtable" is why I am still here to tell the story.

      It would be great to have a personal medical QR code (perhaps an implant chip?) that could be easily updated. Love your rap and your Google+ personalized body data idea! Go Dave!

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