Participatory Medicine

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= a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. [1]

Description

1. From the Wikipedia:

"Participatory Medicine is a model of medical care in which the active role of the patient is emphasized. Participatory Medicine has been used at least as early as 2000 to mean one or more of four interrelated ideas:

  • A group of people who suffer from a chronic disease form a community (often an online community, a support group) to share information and mutually support each other.
  • Members of a patient community (or members of a community disproportionately affected by a disease) play important roles in community health decision-making.
  • Patients play a role as part of collaborative "treatment teams" addressing their diseases.
  • A patient is "mindfully" involved in treatment, by making behavioral changes, meditating, or similar acts.

Conceptually, participatory medicine is similar to or identical with concepts such as Health 2.0 or Medicine 2.0, which also emphasize consumer participation.

Participatory medicine is a new model of medical care, based on the development of a team that includes the e-patient, patient groups & specialized social networks, the entire care team, and clinical researchers in a collaborative relationship of mutual respect. It requires equal access to all the data and equal rights in the decision making process, based on all the data available, the information gathered and the collective wisdom of peer social networks . It is based on the understanding that optimally treating an individual patient suffering from a complex medical condition is often beyond any single individual's ability.

Participatory medicine is democratizing, increasing and speeding the production and transfer of medical knowledge. It keeps the communication between patients and physicians porous. Many social networks for e-patients suffering from rare conditions have experimented with different iterations of the model, with varying degrees of reliance on technological tools, social networking, scientific involvement, advocacy & partnerships with both clinicians and translational researchers. Some e-patient groups are demanding a central role in the formulation of the research agenda for their conditions and in the design, review and pursuit of research. "One of the great benefits of patient-initiated research is its speed, professional research has a built-in lethal lag time-a period of delay between the time some people know about an important medical breakthrough and the time everyone knows. And, as a result, many patients who could have been saved by the latest treatments die unnecessarily. …Physicians are just as much a victim of this lethal lag time as their patients." Norman Scherzer, President, The Liferaft Group

Participatory medicine is a phenomenon similar to citizen/network journalism where everyone, including the professionals and their target audiences, works in partnership to produce accurate, in-depth & current information items. It is not about patients or amateurs vs. professionals. Participatory medicine is, like all contemporary knowledge-building activities, a collaborative venture. Medical knowledge is a network." (http://en.wikipedia.org/wiki/Participatory_Medicine)


2. From e-patients.net (Society for Participatory Medicine:

"Simply put “Participatory Medicine (PM) is a model of medical care acknowledging the central role of the e-patients in medicine and requiring their active participation and engagement, because health professionals can no longer do it alone.”

As we put the finishing touches to the Journal of Participatory Medicine, it is ever clearer that various stakeholders have different views of what constitute participatory medicine. In particular, our different backgrounds are shaping how far we accept the central role of the engaged and networked patient in the brave new world of PM.

Using various social media, I have tried to iteratively refine the initial definition crafted in Feb 2008. The Wikipedia definition remains the single most quoted definition, but I have come to believe we should provide the much simpler one, above. As Alan Greene, MD commented in the crowdsourced definition of PM: “The ‘participation’ in Participatory Medicine isn’t just a patient participating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.” (http://e-patients.net/archives/2009/10/whypm.html)