e-Patient Dave tells his story


In the Connected Health conference at Partners I sat in on a great session in which e-Patient Dave (Dave deBronkart) and his physician, Danny Sands described his use of listservs, the Internet, email and BIMDC’s PatientSite and other tools in his (successful!) battle with renal cancer—after being told median survival was 24 weeks. I won’t tell the whole story as they’re trying to get it published in an authoritative journal—so that physicians will pay attention and promote this use of technology by patients.

Danny Sands says most patients with his condition feel incredibly alone. but "Dave told me he didn’t think he was isolated. He felt

Dave said, “Reading and connecting online makes me a better patient. But it doesn’t make me an oncologist.” But doing all these things via ACOR and the use of CaringBridge and PatientSite did, he believe, increase his hope & outlook, and helped make his treatment successful.

A remarkable story and one that we’ll tell more about later.

(Note: I made a minor edit as my original note got garbled between my ears and my fingers!)


7 replies »

  1. Matt is right: no one participating in any ACOR group would ever think that activated and informed patients can replace oncologists. But many participants know that they can guide oncologists by providing them with the most current information about treatments, experimental or standard. By doing so they can easily improve the quality of care they receive.
    For example, patient networks are much more actively tracking side effects of all treatments than almost any doctor. The only exception is when the clinician is the PI of a trial and his/her ability to get long term funding comes from providing accurate and current info back to the pharmaceutical company or the federal agency funding the trial.
    We have started discussing this radical change in the paradigm: authoritative medical information is just not what it used to be! Accepting and incorporating patients into real medical decision making process also means accepting that patient networks do produce new authoritative medical information, against all the rules used until now to justify knowledge claims.

  2. Thanks, Bev. Your point about web info vs print was driven home repeatedly at the conference this week. The time delay caused by any conventional vetting process is driving that entire world into dinosaurity – the whole idea of “Wait, wait, I’ll get it to you in a few weeks or months” is becoming less valuable as a method of achieving reliability. And that’s not to mention that in a rapidly changing world, print is instantly outdated.
    But there’s a deeper thing going on here, even beyond the dynamics of publishing online vs paper. The deeper issue is that information is getting loose. This is exactly what the late Tom Ferguson M.D. foresaw in these 1995 slides, just months after the World Wide Web came into being: an information inversion that would lead to an inversion of healthcare itself. Visionary.
    I hasten to add, as Matthew said: being empowered and having information doesn’t make me an oncologist. As Doctor Dan and I said on our last slide, the point is to embrace knowledge symmetry.

  3. My continued applause to and best wishes for e-patient Dave, whom I know from Paul Levy’s blog. I wish to add a couple bits of anecdotal supporting information. First, my brother has early Parkinson’s disease, and says that he has found much more useful information from the Parkinson’s foundation and patient groups online than most of his (often ill-informed)physicians. Second, Dr. Bruce Friedman on his blog “Lab Soft News” has recently supported the idea that medical information found on the web far outshines that in the print literature available to most laymen. This is truly a revolutionary advance – especially for those who live in more rural areas with little access to cutting edge medical care.

  4. > musings on his world
    MY world? I see… Dr. Grohol diagnoses that my view of reality may not exactly match that of others. 🙂
    Well, so be it. Let the revolution begin.

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