TED Conversations

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: This question comes via Facebook, from PJ Bird: ‎
    Please suggest to Dave, if possible, that he make his "form" available for all of us who would like to use it! [Lost my dh 11 mos ago, carried a 30lb bag of medical records to every single dr. appt (even to his primary docs) so that all the i's got dotted and all the t's got crossed. Every patient should have a (simple) form like his design to prevent errors, miss critical information and to be the "owner" of his/her information.]
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      Jul 27 2011: Hi PJ! Believe it or not I don't have a "form" or i would indeed share it. The reality today is that we need to engage with WHATEVER our docs and hospitals are using - paper, electronic, whatever. You're legally entitled in the US to a copy of it all, and new regulations mean it will become easier in the next few years. Until then, in a crisis episode, ASK TO SEE YOUR RECORD, frequently, and persist until you get it.
      • Aug 10 2011: Thank you! Can you cite the regulations that state I'm legally entitled to a copy of my records? I'd like to pursue this for a reason other than being an empowered patient. Not to sue, by the way!
        And, perhaps, you've inspired me to "design" a form that would have been helpful and easier on my elbow/shoulder! And could be emailed, like you say you do before an appointment with your HCP.
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          Aug 11 2011: PJ, you're entitled to a copy of your record under regulations written for the HIPAA law, passed in 1996. (Health Insurance Portability and Accountability Act)

          Here's a flyer about it, with a Seinfeld episode that ties into this... Seinfeld doesn't mention HIPAA partly because HIPAA was passed shortly before this episode aired. http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/

          Many hospitals hide this from you or stonewall it ("It's not our policy") but that is ILLEGAL and can get them busted. Just say "HIPAA" (pronounced hippa) and they ought to cringe...

          Mind you, they're allowed to take a month to deliver it, and they can charge whatever state law allows. But, increasingly, if one asks nicely or pleads hardship, the record can be received reasonably quickly for free or at little cost.

          Let us know how it goes...

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