Participatory Medicine

Participatory Medicine is a model of medical care in which the 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. [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.]
* Patients play a role as part of collaborative "treatment teams" addressing their diseases. [ gillesfrydman; "Principles of Participatory Medicine"; http://www.7word.net/?p=40 ]
* A patient is "mindfully" involved in treatment, by making behavioral changes, meditating, or similar acts. [ Jon Kabat-Zinn; Commentary: Participatory medicine; Journal of European Academy of Dermatology and Venereology (2000);14:4 239-240 ]

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.

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 thingsand believe we need to be ahead of the curve. The challenge is tochannel the energy of this outstanding organization to help thepublic 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 [ [http://publicaccess.nih.gov/FAQ.htm#content Frequently Asked Questions ] ] , but you have to do something for yourself.

:::- Elias A. Zerhouni, M.D., NIH Director, December 2007 [Zerhouini, EA; "The Promise of Personalized Medicine"; [http://www.nih.gov/about/director/interviews/NLMmagazinewinter2007.pdf NIH MedlinePlus; Winter 2007] ]

See also

* Patient empowerment
* e-Patient

References

Further reading

* [http://www.nap.edu/catalog.php?record_id=10757 Exploring Challenges, Progress, and New Models for Engaging the Public in the Clinical Research Enterprise: Clinical Research Roundtable Workshop Summary] , The National Academies Press

External links

* [http://www.nih.gov/about/director/interviews/NLMmagazinewinter2007.pdf NIH MedlinePlus Magazine, Winter 2007]