Thursday, July 3, 2008

CNN's "Empowered Patient heroes" recognizes e-patient pioneers Tom Ferguson and Gilles Frydman

Cross-posted from the e-patients blog, where I'm an author.

Today's entry in the "Empowered Patient" series, by medical correspondent Elizabeth Cohen, is titled Empowered heroes' hard lessons now help others:

This week, as we reflect on American heroes, we're saluting a few "patient empowerment" heroes, whose experiences with the health system have inspired them to help others.
I'm someone who has personally benefitted from the road these pioneers paved and lit, so I'm very glad to see this growing public awareness of their vital work.

The column's details page includes stories of ordinary people who, not unlike America's founders, had experiences that left them feeling that "we the people" could create a better reality with a new balance of power. They set out to create a newly empowered citizenry, and they did. Consider:
  • About e-patient founder "Doc Tom" Ferguson, Cohen writes: "If there's a 'George Washington' of the empowered patient movement, it's Doctor Tom Ferguson. In 1975, at a time when many doctors were still viewed as all-knowing and infallible, Ferguson, a physician, author, and researcher, started writing about patients advocating for their own health care."

  • Michael Cohen, whose work on medical errors thirty years ago led him to found the Institute for Safe Medical Practices.

  • Gilles Frydman, whose experience with his wife's cancer in 1996 led him to form ACOR, the network of free cancer listservs that made such a difference for me during the peak of my cancer experience last year.

  • Ysabel Duron, KRON news anchor whose 1998 encounter with Hodgkins Disease led her to notice (among many other things) that Latinos were largely missing from the cancer treatment scene; she founded Latinas Contra Cancer.

  • Trisha Torry, whose incorrect cancer diagnosis in 2004 led her to found She also runs

  • Victoria and Armando Nahum, whose son's 2006 death from an in-hospital infection has led them to form the Safe Care Campaign, teaching about preventing infection.
I want to point out a few things.

First, most of these people took a highly adverse experience and used it to create a new reality that had never existed before. To me this is a high expression of the human spirit.

Second, none of them did it for personal gain. This is people creating things for the public good.

Third - and perhaps most important on this Independence Day in America - although each of them is "just one person" (or couple) facing a massive establishment, think about the results we have today. It's commonplace to research one's own medical condition, doctors increasingly welcome such participation, people increasingly know it's their right to ask questions of their doctors (and the whole system), and more and more, people are banding together (especially on the Internet) to share their knowledge with others.

We still have a long way to go, but increasingly people are empowered to participate in their care.

I never knew Doc Tom, our "George Washington." He died before finishing his manifesto, "e-patients: how they can help us cure healthcare." Members of the e-Patient Scholars Working Group completed it in 2007 (PDF, wiki). The cover carries one more allusion to 1776: "I felt I was looking over Thomas Paine's shoulder."

When I first found this group in January, I said something about "the Sixties motto 'power to the people,' made real in the world." I guess it goes back farther than that. Thanks to all who've done the work so far - and thanks to CNN's Cohen for spreading the word.


  1. Dave,

    Thank you for this blog. It is a supportive contribution to others who find it and a welcome signal to all who stumble across it that the human spirit is alive and well. You are amazing. You are in our thoughts. Your life and your words make a difference.

    - Victoria and Armando Nahum

  2. What an honor to have you leave a note here, Victoria! Thanks so much for the work you've been doing, as recognized by CNN. I've only been at this for a few months. Keep in touch.


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