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Update 3/21: For easier reference, I’m editing this to incorporate some goodies from comments below.

Here’s a little game that just might turn into something transformational.

Since I started learning about this world of participatory medicine, I’ve looked for patterns that can teach us something. (That’s what I do at work, in high tech – look for patterns that help understand and predict.)

After reading the e-patient white paper (you should if you haven’t), I started to notice ways that certain patients created great value, far beyond what their mortals docs could do alone. Notice the slogan at the top of this page.

Here’s a thought: perhaps Our patron saint Gilles Frydman has long said that some of the most potent e-patient specimens are health professionals who become patients themselves. Let’s collect some names.

For starters:

  • Doc Tom Ferguson himself, founder of this group – a multiple myeloma patient who far outlived his prognosis
  • Doreen Kossove, powerhouse pediatrician, the soul of her ACOR community, who just died last month after outlasting her leiomyosarcoma prognosis by a decade. (See Elizabeth Cohen’s piece.)
  • Ken Youner, retired MD who’s a vital and valuable contributor to my kidney cancer group on ACOR.

Additions submitted in comments:

  • David Servan-Schreiber MD, PhD, author of Anticancer: A New Way of Life.
  • Dr. Steven Fadem, MD. Being diagnosed with a deadly disease changed his practice of medicine. (Details below.)
  • Diabetic docs cited by Diabetes Mine goddess Amy Tenderich:
    • Dr. Steven Edelman of TCOYD / UCSD
    • Dr. Irl Hirsch of Univ of Washington
    • Theresa Garnero of UCSF

Your thoughts please? Other examples? Let’s collect ’em. And I’m callin’ ’em “d-patients” – a subset of e-patients.

One thing d-patients prove is that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.

Your turn: Names, please.


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