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 shared decision making, evidence based patient choice, 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.
In Health Research
Participatory Medicine is seen as a policy goal by some prominent health researchers and officials. The Director of the US National Institutes of Health stated the following:
As opposed to the doctor-centric, curative model of the past, the future is going to be patient-centric and proactive. It must be based on education and communication.
This is what I am pushing for at NIH. I like to change things and believe we need to be ahead of the curve. The challenge is to channel the energy of this outstanding organization to help the public better care for itself. No one knows exactly how to do this. It requires voluntary, intelligent participation, not passive acceptance. We can provide the information, but you have to do something for yourself.
- - Elias A. Zerhouni, M.D., NIH Director, December 2007
- Vargas RB et al.; Community-partnered approaches to enhance chronic kidney disease awareness, prevention, and early intervention; Adv Chronic Kidney Dis. 2008 Apr;15(2):153-61.
- gillesfrydman; "Principles of Participatory Medicine"; http://www.7word.net/?p=40
- Jon Kabat-Zinn; Commentary: Participatory medicine; Journal of European Academy of Dermatology and Venereology (2000);14:4 239-240
- Eysenbach G Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008;10(3):e22
- Frequently Asked Questions
- Zerhouini, EA; "The Promise of Personalized Medicine"; NIH MedlinePlus; Winter 2007
- Why Participatory Medicine?, Esther Dyson's introductory essay at the Journal of Participatory Medicine
- Why Healthcare Professionals Should Practice Participatory Medicine: Perspective of a Long-Time Medical Editor, George Lundberg, former editor-in-chief, JAMA and Medscape Journal of Medicine
- Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary, The National Academies Press
- Global Alliance for Self Management Support
- Systematic Review Published in JMIR Tom Van de Belt, Lucien Engelen et al. systematic review found 46 (!) unique definitions of health 2.0 (Van De Belt TH, Engelen LJ, Berben SAA, Schoonhoven L Definition of Health 2.0 and Medicine 2.0: A Systematic Review (J Med Internet Res 2010;12(2):e18)URL: http://www.jmir.org/2010/2/e18/)