Making Healthcare Better through Participatory Medicine

I was humbled and honored today that 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.

Photo courtesy of Beth Israel Deaconess Medical Center

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

This is validation that patient engagement – participatory medicine – is an idea whose time has come.

I’m a spokesman for the movement (and yes it’s now a movement), but I’ve been at it less than two years. I want to acknowledge some of the pioneers who paved the way.

First, of course, is Dr. Sands. As the article says, “Sands is a huge advocate of using technology to improve the patient experience.” And he’s good at it: I know firsthand that he provides clear, empowering, gentle yet firm guidance.

Second is the terrific group of pioneers, analysts and visionaries 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.)
DannyCard3
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 right 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.
_______________________

Update December 18:

Here’s an informal, off-the-cuff conversation Dr. Sands and I recorded just after we delivered the Medical Grand Rounds interview on December 3 at Beth Israel Deaconess Medical Center.

8 comments to Making Healthcare Better through Participatory Medicine

  • Dave- Congratulations on well-deserved recognition. Too often, the self-appointed visionaries for health transformation have never experienced the kind of problem that puts them in that 5% of patients who generate 53% of the costs of care. You, thrown into such a position, have put both a human face on this minority and by exposing, for example, the weakness of billing-code based systems for the people who we need to empower the most (such as Google Health as I saw you do from your seat in the balcony at Health 2.0 Boston). You have effectively shifted the focus in the right direction.

    So many times, we trumpet health solutions that work for 90% of the population as critical advances, but that 90% represents a minority of the costs of care. I, myself, have turned the corner on a strange blood condition that has a frequency of one in a million and was unknown to the array of physicians who I saw over two years.

    A significant fraction of patients struck by the bad luck of injury or illness can be engaged to participate in their own health. I led a company making software to monitor and connect with their physicians patients with major depressive and bipolar disorders and at the end of a year-long randomized controlled study, we found that the sickest patients were the ones who were most engaged. What are most often missing are the tools and desire to support that engagement, and you are changing that.

    Kudos and congratulations.

    Pete

  • Dave – Congratulations to you and Dr. Sands. I’m looking forward to watching how you lead the health care world into new territory! All the best.

  • F. Houston Galloway

    Dave, you have been such a pleasure to know. What an awesome person you are. You have made and are making a real difference in the world. Keep singing.

  • Arlene Swirsky

    Well done and about time. I first journaled my experience with the life and death of my daughter Heather, who died of complications of Familial Dystautonomia. At the time of her birth in 1971, she was the first patient at Mass General suffering the syndrome. The information I needed to make her life tolerable to all of us was chronicled and published in the book ONE BRIEF SHINING MOMENT.
    My second book, REDISCOVERING MY INNER BITCH, was the coping technique I used during my wait, surgical experience and recovery from a renal transplant. It was published in 2007.
    There is so much information in both books, I have always tried to find a way to share the rather unique experiences I have had.
    Continue your good work and I will be a loyal subscriber to your blog.

  • Pete, with all that’s been going on, I just now took the time to absorb your comment. I’m moved – thanks so much.

    And congratulations on being a successful e-patient yourself! You should write it up for the “I am an e-patient” page. You exemplify the “d-patient” – doctors who become e-patients, finding information beyond what their own care providers could provide.

    That’s a great kind of teaching, because it shows being an e-patient is not “anti-doctor” – and shows that it’s unreasonable to expect that the end of all knowledge resides in any one person’s head, even a doctor’s.

  • Congratulations to you and Dr. Sands! I saw your presentation at TEPR last year and enjoyed the first ever “TEPR tweetup.” You two are awesome!

  • Great to hear from you, Julie – it was a pleasure to see you then!

  • […] This post was mentioned on Twitter by ePatientDave, BarbaraFicarra. BarbaraFicarra said: RT @ePatientDave: Acknowledging the participatory pioneers behind the "HealthLeaders 20" honor: http://is.gd/5he5Q […]

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