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Just Launched: Journal of Participatory Medicine
Jon Lebkowsky, 23 Oct 09

The Journal for Participatory Medicine has just launched with a session at the Connected Health Symposium in Boston. According to the press release,"the Journal will be written and peer-reviewed by and for all stakeholders: patients, healthcare providers, caregivers, researchers, payers and policymakers. Physicians who have practiced in the participatory model report greater satisfaction when they work with patients who are actively engaged. Similarly, participatory patients say they feel empowered, heard, and more in control."

Participatory Medicine is a new approach that encourages and expects active patient involvement in all aspects of care. Several years ago, the late Dr. Tom Ferguson pulled together a group of physicians, patients, and other professionals (including myself) to work with him on a white paper called "e-Patients: how they can help us heal healthcare." Tom had long believed that empowered patients could understand their bodies and their conditions as well as or better than physicians who were treating them, and should be seen as peer participants in their treatment. He had edited healthcare sections of the Whole Earth Catalog and a magazine called Medical Self-Care, and when the Internet appeared on his radar, he saw immediately the potential for patients to have accelerated access to healthcare information - and to each other. Online patient communities and mutual support systems could and did form early on, and promised to be vital parts of the healthcare ecosystem. We're just beginning to appreciate how vital, thanks in large part to Tom and his work.

After Tom died, those of us who had worked with him considered how to carry his work forward. We had been advocates for the participatory medicine model, and we had an active blog at, but we believed that the best way to establish the credibility of the concept was through the creation of an objective, evidence-based, peer-reviewed journal. Less than a year ago, the group formed a Society for Participatory Medicine and started work on the Journal. Its launch follows an intense period of work and organizational effort. The first issue is introductory, and includes such articles as

  • Investor and futurist Esther Dyson on "Why in the world 'participatory medicine'?"
  • Longtime JAMA editor George Lundberg MD and former AARP board chair Joanne Disch PhD, RN: "Why healthcare professionals should be interested in PM"
  • Kate Lorig RN, Dr.P.H., Director of Stanford School of Medicine's Patient Education Research Center: "Why people should be interested in PM"
  • David Lansky, CEO of Pacific Business Group on Health and former Senior Director at the Markle Foundation, on "Why payers should be interested in PM"
  • Kurt Stange MD, PhD, Case Western Reserve University and editor of the Annals of Family Medicine, and Gilles Frydman, founder of the network of cancer communities, on "Building an interdisciplinary field of inquiry and practice"
  • Richard Smith MD, former editor of BMJ, and Musa Mayer, famed breast cancer activist, on "The Value and Questions of Peer Review"

While the Journal has been in development, the healthcare debate has focused attention on many problems within the system, and many believe that some of the solutions will emerge from patient empowerment and supportive interaction. The Journal and the Society are catalyzing change in the way we look at healthcare delivery, moving to a highly collaborative network model, part of a broader democratization of knowledge and, as Yochai Benkler says, "wealth of networks."

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Actually participatory medicine isn't new - it is only new if you are ignorant of the way that other people practice medicine. For example it is one of the cornerstone of Ayurvedic medicine which has a history of around 2,500 years.

Posted by: Alan McCrindle on 24 Oct 09

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