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"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
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 with optimal is often beyond any single individual 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 condition 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 audience work 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.
External links
- http://e-patients.net
- Principles, Topics & Memes of Participatory Medicine
- NIH MedlinePlus Magazine, Winter 2007
- The Growing Clout Of Online Patient Groups
Books
- Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary, The National Academies Press