We (all, here) couldn’t agree more that participatory medicine is a two-way street, requiring (even demanding) changes in the role of both ..um.. participants. Truly so.

Thank you for sharing, indeed! Very nice post coming from a healthy clinician.

I thank you for writing about Warner Slack, who with Tom is one of my personal heroes. Warner was one of the only physicians who, in 1996, understood the idea behind ACOR and became one of its first board members.

I really enjoy reading your rationale for supporting and promoting the concept of participatory medicine. But your explanation of the meme remains very much doctor centric as it appears in your conclusion: “One lesson that I share with physicians is that Participatory Medicine is not just something that we do for patients. It’s something we do with patients and that benefits both patients and physicians. I passionately believe that the status quo in healthcare is unacceptable. Participatory Medicine is necessary to the future of healthcare delivery.”

I agree with the last sentence but as the one who proposed the term Participatory Medicine to the founding group of SPM in Feb 08, I want to remind you of my definition at that time, and one that I’ve promoted ever since: PM refers to patients participating in their care (with whoever is needed or available at any point). In other words, clinicians are not required to set participatory medicine in motion. When 2,000 cancer patients discuss new treatments, side effects or many other topics of interest to them, they are “doing” participatory medicine, filling in the void in care that the modern health care system has created and they do so without the presence of any clinician. As quoted in the preface of our White Paper:

“The time has come for a major conceptual shift… from viewing lay people as consumers of health care to seeing them as they really are: its primary providers.” -Lowell Levin and Ellen Idler

Unlike what happens in most medical settings, medical care for anyone suffering from a life-threatening condition is best seen as a continuum not as a series of disjointed episodes of care. Patients that are involved in participatory medicine have all understood that fact and they manage their condition accordingly, saving themselves and society real expenses and transforming the level and quality of care they receive as well as making real positive changes in their Quality Of Life.

This remains hard to accept by many physicians but Tom saw the writing on the wall more than 30 years ago and lived his life as the original theorician of participatory medicine, while living with cancer for 15 years! One of his fantastic original ideas is the reverse triangle explaining the new paradigm of medicine: