Participatory Medicine

The Society for Participatory Medicine defines participatory medicine as a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which medical care providers encourage and value them as full partners.

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 related to concepts such as Health 2.0 or Medicine 2.0, which also emphasize patient participation. Participatory medicine is a phenomenon similar to citizen/network journalism where healthcare providers and patients works in partnership, using modern communications tools, to increase the participation of the patient in their medical decisions.

Participatory medicine is a model of medical care, based on the development of a team that includes the patient (often referred to as an e-patient), patient groups & specialized social networks, the entire care team, and clinical researchers in a collaborative relationship. 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.

In 2009 the Society for Participatory Medicine was incorporated by members of the e-Patient Scholars Working Group. Founding co-chairs were Daniel Zev Sands, MD MPH, and "e-Patient_Dave" deBronkart (a physician and a patient), and founding president was Alan Greene, MD. In 2010 Greene and deBronkart became co-chairs, ACOR founder Gilles Frydman was elected president, and Sands became vice president. The Society's board revised the definition in 2010 to:

Participatory Medicine is 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.

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.