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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.

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Topics: Healthcare
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  • Sarah Baron

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    Aug 10 2011: An important topic, especially in light of changes in the delivery of health care in the US. Couple points: 1) I suspect some docs must distance themselves from engaging too deeply w/patients to avoid burnout. It's standard to do debriefing in crisis care and mental health care delivery and should be for docs. It's emotionally exhausting. Not that this excuses not listening to patients or collaborating with them - it DOESN'T - but it's a possible defense mechanism. 2) The web has not leveled the playing field btw doc and patient in that most patients do not have the training their docs do. However it does change the power dynamic and makes them more of a collaborator and more able to become the most motivated researcher you're going to find - docs could consider this free labor. 3) Adoption of EHR will be a rough road but I think in a culture where more people are comfortable putting personal info online, it will become more and more accepted and, eventually, a powerful tool for sharing among docs, specialists, patients, researchers, and advocates. 4) less literate patients or people without web access would be served by people willing to be patient advocates (a growing field, BTW) who will assist them in doing some researching and finding resources online. the new social work/case coordination role.
    So many implications and food for thought - thanks for the talk. I actually solved my own husband's health mystery when ER docs and PCPs could not - after 4 years of multiple trips to the hospital - through persistent internet research. Now we know what was making him violently ill and how to stop it. Powerful stuff.
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      e-Patient Dave deBronkart 50+

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      Aug 11 2011: Sarah, in short you're pretty much spot-on with everything you said.

      I'd love to know more about how you helped solve your husband's tricky diagnosis. Jerome Groopman MD's book "How Doctors Think" (an e-patient essential IMO) cites that autopsy shows 10-15% of diagnoses were wrong (!), and he focuses at length on the complexities and pitfalls of the diagnostic process.

      Every true story helps make the point, whether it's in a speech or a policy meeting. So if you want to share more details, please email me via my profile.

      • Sarah Baron

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        Aug 11 2011: I'll keep the details private as my husband would not like them shared, but I took the following approach: I searched PubMed and used his symptoms as keywords for a Google Alert. I did a lot of searching online and took a few wrong turns before I figured it out, so people, be persistent! His condition is not one that has been identified in the literature for long (maybe 5 years) and I actually identified it first through an informal chat forum, which led to a journal article. The symptoms sounded so familiar, I emailed one of the authors of the paper. They responded (!) that it sounded like he had the condition and recommended he follow up locally with his doc. Bingo. He is working on getting healthy and his condition has improved.

        Along the way we had a lot of frustrating times as docs who can't provide a dx seem not to want to be bothered (or look bad?) and simply treat the symptoms and send him home.

        I'm not against docs or hospitals, I think they are in a tough position - IMO they should be paid for prevention and keeping pts healthy, not by the # of prodecures they can rack up (and make pts endure).

        It helps that I do public health communications-type work for a living but I am not a medical expert. Having some knowledge of the resources out there and good search skills does help.

        Thanks for the recommendation on the Groopman book - I'll look for it!

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