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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  • Aug 10 2011: My husband and I had/have the benefit of working for a legacy airline. When it became clear that his melanoma was changing pace, I began scouring the web for trials, world-wide. I called our- and I mean OUR doctor (cancer is a FAMILY disease) to request some additional testing, in a hurry. At first, I felt like I was met with some resistance. Then, after my DH failed to meet the criteria for that trial, on the other coast, I found another trial. He didn't quite make the criteria for that one either. The third one, had just closed- the 20 clients (or whatever small number of participants permitted) had been selected. It was with a very sick feeling in the pit of my stomach that I called our dr again to agree to a meeting about IL2. When we got to the clinic for that meeting, the dr was on the phone with a colleague in another city, on our coast, and had made an appt for the next day to actually ENTER the study. Our dr specializes in breast CA, melanoma is second. Thanks to Dr. Smith of Portland OR and his willingness to listen to our dedication n committment to try anything, anywhere, I was blessed with 4 more months of love from my husband. I will NEVER be able to express my gratitude to him for listening (a lot more than I had given him credit for). Somewhere along the way, we made an impression on him that made him take notice of our passion. Perhaps it was our 4 yo son sitting on my DHs lap during treatments 8 yrs earlier, perhaps it was my persistence...never will know. And naysayers, 4 months is a VERY long time! Having the info we needed, when we needed it made all of this possible. Insisting on copies of everything, everytime helped.A lot.And more than Dr. Smith made it possible, he's just our favorite. And having an advocate-either self or someone else- is absolutely critical. As a widow now, I fear for my health if it fails suddenly. My 13yo son will be of little help. Better get my hc info in writing very soon-and tell him where it is stored! Thanks Dave
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      Aug 10 2011: PJ, your story brings tears to my eyes. I *so* completely get what you faced, and the truly priceless benefit that accrued from your activism and the fact that your doctor let patients help.

      Best,
      Dave

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