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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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  • Jul 27 2011: I believe that the patient has become the most under-used resource in healthcare because doctors have stopped listening to us. The reasons are many, but include: increased reliance on technology, reliance on the insurance companies to slot diagnoses into easy answers, brevity of appointment time, no years-long clinician-patient relationship, and the diagnostician's own reticence to say, "I don't know, but I will take responsibility to help you."

    Dr. Richard J. Baron said in An Introduction to Medical Phenomenology: I Can't Hear You When I'm Listening, "We must learn to hear our patients as well as their breath sounds; after all, what are we listening for?" The patient's own testimony is supposed to be part of evidence-based medicine, and when you put together multitudes of similar, independent testimonies, you have a powerful evidence base that should not be denied. Sadly, when patients aren't being listened to, we lose their clues to the cause and cure of their illnesses, and we lose what it is to care.
    • Jul 27 2011: I agree with that wholeheartedly Sharon as the patient is the catalyst for the meeting. If that were not true Dave saying his shoulder hurt would not have brought this meeting together, because no xray would have been done to find a tumor.
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      Jul 28 2011: Sharon, the relevant question, then, is WHEN did professionals stop listening to us, compared to when they did?

      Did you ever have a doc who listened well? I certainly have, and in fact I've ditched two with whom I didn't get along well.

      The phenomenon I'm talking about, though, goes waaaay back. I've talked to numerous physicians in my travels who say their mentors TAUGHT them not to waste time sharing information with patients.

      This is culture, and it's indeed changing. In my experience there are numerous doctors who agree with this, and most residents fresh out of school have not yet been "mentored" into shutting us down.

      For our part, we can ASK our doctors to listen. See the other commenter who realized the trick was to stand in front of the door so the doc couldn't leave. :)

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