Matthew Holt

The Journal of Participatory Medicine

ePatientDave and Giles Frydman have been working on the Society of Participatory Medicine for a while  and Alan Greene MD will be the first President. Now there’s a editorial board for the Journal of Participatory Medicine. The editors will be Charles W. Smith (who announced it at the end of last month at his blog eDocAmerica), and Jessie Gruman, patient extraordinaire from the Center for Advancing Health. There’s also an advisory board including Kevin Kelly, Adam Bosworth, Esther Dyson, David Kibbe, Howard Rheingold, Eric von Hippel, & Peter Yellowlees—which is a good mix of Ubbergeeks and geeky doctors.

To me there’s a slight difference between Health 2.0 which in my definition is more about using tools and technology to change the health care system, and participatory medicine which is centered around the e-Patients blog. But that hasn’t stopped other definitionistas (yes, I mean you Ted!) from crunching them together—and of course any tension between them is significantly less than the common purpose of changing health care using the best tools available.

And the thing I’m most excited about is that I’m not involved, so I don’t have to do anything other than enjoy the results! The list of suckers esteemed volunteers on the Editorial Board (and despite my kidding it is a great group) is below. Kudos to all of them for working hard to get this off the ground.

Editorial Board Members Mohammad Al-Ubaydli, MD, Patients Know BestJack Barrette, WEGO Health Mike Battaglia, Health care consultant; formerly Intuit and Humana Jeffrey Bland, PhD, Metagenics and The Institute for Functional Medicine Kate Christensen, MD, Kaiser Permanente Susan Edgman-Levitan, PA, Stoeckle Center for Primary Care Innovation, MGH Ted Eytan, MD, MPH, Permanente Federation Patty Feist, Pediatric Oncology Resource Center Rushika Fernandoupulle, MD, MPP, Renaissance Health Peter Frishauf, Crossix Solutions, Medpage Today, Omnimedix Institute Gilles Frydman, ACOR Alan Greene, MD,, Standford Univ. Sarah Greene, Keas Inc. Dan Hoch, MD, MGH & Harvard Medical School; Alejandro Jadad, MD, Centre for Global eHealth Innovation, Univ. Toronto Greg Juhn, A.D.A.M. Inc. Gary Kreps, PhD, Health Communications, George Mason University Joseph Kvedar, MD, Center for Connected Health, Partners HealthCare, Harvard Medical School David Lansky, PhD, Pacific Business Group on Health Jon Lebkowksy, Social Web Stragegies; Weblogksy blog Kate Lorig, RN, DRPH, Stanford Univ. School of Medicine and Stanford Patient Education Research Center Amy Marcus, Wall Street Journal Faith McLellan, PhD, World Health Organization Carol Peckham, Medscape Carlos Rizo, MD, Health Strategy Innovation Cell and eHealth in Motion David Rosenthal, MD, Brigham & Womens Hospital (Resident) Andrew Schorr, Patient Power radio program and webcasts Josh Seidman, PhD, Information Therapy Clay Shirky, Interactive Telecommunications, New York University Amy Tenderich, Trisha Torrey, DiagKNOWsis,, Roni Zeiger, MD, Google Health

3 replies »

  1. Although we tend to apply new labels to old (and very similar) concepts and ideas (Internet medicine, cybermedicine, ehealth, health 2.0, participatory medicine), I should point out that a journal which covers this area already exists: The Journal of Medical Internet Research ( has been publishing research and commentaries in this field for over 10 years, and some of the editorial board members from that new journal are also involved in JMIR.
    I regret that they decided to create a competing journal rather than collaborating with the existing, leading journal in this field, and I wish them good luck – creating a new journal in the era of Web 2.0 is almost an anchronism. I do hope they succeed, but I also should point out that JMIR has always been and will remain a home for commentary, discussion, and research in this area, and new section editors are always welcome (

  2. Kudos Gilles!
    Both you and Dave deserve considerable juice over your commitment to the idea and evolving principles of a ‘participatory medicine’ discipline. I sense a confluence of factors coming together to congeal the concept, vision and values of a re-engineered personalized, and mutually accountable, medical model.
    For too long we’ve witnessed the quarantine or exile of the healing shaman energy into an objectification experience. Our ‘cathedrals of medicine’, driven by a fear based model, routinely separate themselves from the very people they serve via complex, unresponsive, costly and inefficient finance and delivery architecture.
    Meanwhile, the detached notion of clinical intervention (vision Freud and a couch, or the ‘appy in OR 2’) while relevant in some circumstances, too often devalues the ‘relationship component’ to the healing process – witness the power of belief systems and well documented ‘placebo effect’.
    Yes, lets give a voice to the patient/consumer. We certainly belong at the table of the health care exchange relationship.

  3. Thank You Matt!
    As one of the original suckers esteemed volunteers I am thrilled to finally see the birth of a publication that should provide a sound basis to many of the concepts we have been talking about for years, mostly to small audiences. David Kibbe & Joe Kvedar did a remarkable job in presenting their initial version of a Participatory Medicine research agenda a few months ago. The Journal should help disseminate many aspect of this scientific endeavor.
    I hope the journal will also be a tool to help surface many of the unknown innovative patient-centered or patient-directed solutions to problems faced daily by health citizens.
    We have definitely come a long way in 14 months, when I had my exchanges with the Wikipedia editors who were complaining:
    “Thus, Wikipedia articles should not speculate about the future, and should not advocate for a particular perspective that can’t be construed as fact. To my reading, this article does both of these. It speculates about the future of Participatory Medicine, advocates for a concept of Participatory Medicine that is not widely shared, and ties Participatory Medicine to the e-patient concept, which is also not widely shared. But moreover, this particular nexus between Participatory Medicine and e-patient has little support I can find, outside of this Wikipedia article itself. Thus, another instance of advocacy.”