There’s new validation that participatory medicine is an idea whose time has come: the co-chairs of the Society for Participatory Medicine (my primary physician Dr. Danny Sands and I) are on this year’s list of 20 People Who Make Healthcare Better, an annual feature of HealthLeaders magazine.

With Dr. Sands in an examining room at Beth Israel Deaconess Medical Center (photo courtesy of BIDMC)

We want to acknowledge some of the pioneers who paved the way. Danny said an email that “people like e-patients.net founder “Doc Tom” Ferguson, Tom Delbanco, Warner Slack, and others started it. I’m standing on their shoulders. I only helped you start yourself.”

Next is the terrific group of pioneers, analysts and visionaries here at e-patients.net, who authored “E-Patients: How They Can Help Us Heal Healthcare,” aka the e-patient white paper. The one with the greatest personal impact on my case was of course Gilles Frydman, founder of ACOR.org, the patient network where I found the best information on the internet about my disease.

Less widely discussed are the clinicians who managed my case: oncologist Dr. David McDermott, surgeon/urologist Dr. Andrew Wagner, orthopedist Dr. Megan Anderson, and nurse practitioners and nurses (alphabetically) Kendra Bradley, Gretchen Chambers, Meghan French, MeeYoung Lee and Virginia Seery. Every last one of them fully supported my avid desire to participate.

The article cites one example of how Dr. McDermott encouraged my questions. When your life is on the line, that’s a wonderful thing – and since he’s at the top of his craft worldwide, it proves that brilliance is compatible with empowerment.

Finally, there’s Paul Levy, CEO of the medical center. When I approached Paul in 2003 looking for a doctor, he said “You’ll probably like this guy” and referred me to Dr. Sands. I guess he was right. (Paul was in the “20” in 2007.)

I want to set the record straight on one point. These days Dr. Sands is sometimes introduced at conferences as “e-Patient Dave’s doctor.” People forget (as we used to tell Mom), “He started it.” For instance, although some docs today still don’t do email, at left is the “back of a business card” set of guidelines Danny published – ten years ago.

(If your doc doesn’t do email, be empowered: click to enlarge, print, and take it in. The voice of the patient (you!) can change things.)

Participate – in our Journal

This year e-patients.net incorporated as the Society for Participatory Medicine, whose principal activity has been the new Journal of Participatory Medicine, which launched in October. The editors are soliciting articles and essays. If you’ve been doing participatory things, you can fortify the industry’s knowledge by sharing your experiences. Please write to editors at jopm dot org.

Thanks to the pioneers

The lead of the HealthLeaders article captures what inspires me about this work:

The very essence of healthcare is to make a difference for good. At its core, this is an industry focused on making life better for people. That simplicity of mission establishes a shared grounding for the millions who work daily to deliver the best healthcare they can.

It’s a true privilege to be part of this group. Thanks to all – and congratulations to all the others on the list.