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Keywords: Participatory medicine, shared decision making, e-patients, self-care.
Citation: Smith CW. The patient, the provider, and participatory medicine — are we a house divided? J Participat Med. 2014 Feb 6; 6:e3.
Published: February 6, 2014.
Competing Interests: The author has declared that no competing interests exist.

Participatory Medicine suggests patient empowerment, improved health, easier access to care, better communication between providers and patients, and much more. But this fledgling field faces challenges in achieving consensus about the meaning of the term “participatory medicine.” Widely varying interpretations have sometimes led to confusion and conflict, and threaten to limit our progress in advancing health.

To illustrate, two respected colleagues recently wrote about this from divergent perspectives. Jesse Gruman wrote in a recent blog post about why patients cannot really direct their own care, nor can they be the captain of the health care team.[1] Although she wants to be considered a team member, her lack of medical training requires her to leave complex tasks and coordination efforts up to the professionals. “To expect me to direct my clinicians’ decisions about the use of procedures, drugs, tests, and other medical resources patronizes me and wastes everyone’s time,” she says. But, leading us in another direction, Gilles Frydman, emphasizing that patients care for themselves over 95% of the time, suggests that we may be better served by focusing more time and energy on promoting patient self-care. A recent post from his blog, “Patient Driven” examines the context of the “inverted pyramid” in which e-patient founder Tom Ferguson placed individual self-care at the top, rather than at the bottom, of the health care system.[2]

I may have a provider bias, but I don’t believe it is productive for our organization to debate whether participatory medicine is primarily about the doctor/patient interface or whether it should focus on patient self-care. Both perspectives are important and are not in conflict. As fellow JoPM Editor Alan Greene is fond of saying, “There is room at the table for all.” It is no more appropriate to focus all our energy on how to promote self-care than it would be to ignore it completely! On the other hand, helping patients navigate more effectively by discussing and promoting a collaborative doctor-patient relationship needs time and attention from the Society of Participatory Medicine as well as from the Journal and other organizational conduits. This definition was published in the first editorial of the Journal of Participatory Medicine in October, 2009: Participatory medicine is a cooperative model of health care that encourages, supports, and expects active involvement by all parties (clinicians, patients, caregivers, administrators, payers, and communities) in the prevention, management, and treatment of disease and disability and the promotion of health.[3] This statement, a balanced view, is what we are about.

The word “participatory” implies that at least two parties are involved. Participatory medicine, from the outset of the “e-patient movement,” emphasized that educating patients by using internet technology would allow them all to participate more meaningfully in their care. To do this, they not only need to use information for better self-care, but also to enable them to ask pertinent questions, better understand lab and procedure results, recognize and avoid adverse events, and, sometimes, even suggest a specific treatment course to the health care team.

This is in line with founder Tom Ferguson’s vision. He carried it out personally during his own complicated medical care process, which I was fortunate enough to have observed and learned from. He had a close, collaborative relationship with his physicians, and used information from his own research to effectively assist in directing his own care while he also relied on his medical team to make the key decisions that affected it. He, therefore, expertly modeled participatory medicine at its best for all of us.


  1. Gruman J. Why patients should not be captains of their health care teams. December 31, 2013. Available at: Accessed February 2, 2014.
  2. Frydman G. The inverted pyramid in context: e-patients serving as healthcare resources. Patient Driven. January 4, 2014. Available at: Accessed February 2, 2014.
  3. Gruman J, Smith CW. Why the journal of participatory medicine? J Participat Med. 2009(Oct);1(1):e2. Available at:

. Accessed February 2, 2014.

Copyright: © 2014 Charles W. Smith. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.