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“Crowdsourcing: the act of taking a job traditionally performed by a designated agent and outsourcing it to an undefined, generally large group of people in the form of an open call.”

Jeff Howe

Or in other words Participatory Outsourcing.

There is clearly a growing interest in Participatory Medicine and with the forthcoming Journal of Participatory Medicine and the Society of Participatory Medicine. Before the launch of these new resources we should get a definition of the term that will be of equal use when explaining participatory medicine to either health professionals or patients/caregivers.

Considering the topic, it seems natural that, just as Ted Eytan did a few months back and Susannah did a couple of weeks ago, we should crowdsource the definition of Participatory Medicine!

My latest definition is :

Participatory Medicine is a cooperative model of medical care, actively involving the patient (or the patients caregiver as appropriate) as an integral part of the full continuum of care.

It requires:

  • a patient enabled by information, software and community
  • equal access to all the clinical and scientific data related to the patient and,
  • a well defined shared decision-making process.

There is a direct connection between this definition and Ted crowdsourced definition of Health 2.0:

Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.

Susannah Fox in her first post on the topic said:

Participatory medicine is the space in between “doctor knows best” and “leave the e-patient alone” to find their way on Wikipedia.  I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence.

Finally, the wikipedia entry states:

Participatory Medicine is a model of medical care in which the role of the patient is emphasized.
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 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.

We have the truly unique opportunity to define a medical term before it becomes in wide use. We should use the blog to democratically achieve this goal!


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