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 and 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.
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 and 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.
Society for Participatory Medicine
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, 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.
In health research
Participatory Medicine is seen as a policy goal by some prominent health researchers and officials. In a December 2007 interview, Elias Zerhouni, the Director of the US National Institutes of Health stated:
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.
- "Society for Participatory Medicine". Retrieved 4 December 2014.
- Vargas, RB; Jones, L; Terry, C; Nicholas, SB; Kopple, J; Forge, N; Griffin, A; Louis, M; Barba, L; Small, L; Norris, KC; Building Bridges to Optimum Health World Kidney Day Los Angeles 2007 Collaborative (April 2008). "Community-partnered approaches to enhance chronic kidney disease awareness, prevention, and early intervention". Adv Chronic Kidney Dis 15 (2): 153–161. doi:10.1053/j.ackd.2008.01.012. PMID 18334240.
- Frydman, Gilles (3 April 2008). "Principles of Participatory Medicine". 7 Words of Wisdom. Archived from the original on 28 September 2008.
- Kabat-Zinn, Jon (July 2000). "Commentary: Participatory medicine". Journal of the European Academy of Dermatology and Venereology 14 (4): 239–240. doi:10.1046/j.1468-3083.2000.00062.x. PMID 11204505. (subscription required)
- Eysenbach, Gunther (25 August 2008). "Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness". J Med Internet Res 10 (3): e22. doi:10.2196/jmir.1030. PMC 2626430. PMID 18725354.
- Klose, Christopher; Zerhouini, Elias A. (2007). "The Promise of Personalized Medicine" (PDF). NIH MedlinePlus Magazine (Winter): 2–3.
- Dyson, Esther (21 October 2009). "Why Participatory Medicine?". Journal of Participatory Medicine 1 (1): e1. ISSN 2152-7202.
- Lundberg, George D. (21 October 2009). "Why Healthcare Professionals Should Practice Participatory Medicine: Perspective of a Long-Time Medical Editor". Journal of Participatory Medicine 1 (1): e3.
- Institute of Medicine (2003). Aungst, Jessica; Haas, Amy; Ommaya, Alexander et al., eds. Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary. Washington, DC: National Academies Press. ISBN 978-0-309-08946-3.
- Van de Belt, Tom H.; Engelen, Lucien J.P.L.G.; Berben, Sivera A.A.; Schoonhoven, Lisette (11 July 2010). "Definition of Health 2.0 and Medicine 2.0: A Systematic Review". J Med Internet Res 12 (2): e18. doi:10.2196/jmir.1350. PMC 2956229. PMID 20542857.
After selection and removing duplicates, we distinguished 46 unique definitions of Health 2.0 or Medicine 2.0 in 44 articles.
- Global Alliance for Self Management Support
- Slide 10 from Lucien Engelen's Opening speech on Second day Medicine 2.0.