Participatory Medicine and the Democratization of Knowledge

Gilles Frydman at (where the Greenes and I also blog) has posted a consideration of the term participatory medicine and the evolving sense of its meaning. Gilles starts with his own definition:
Participatory Medicine is a model of medical care actively involving the patient (or the patient’s 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.

The idea of an empowered patient participating in a healthcare process that was previously completely in the hands of the doctor, with access to information that in the past only doctors could easily access, is inherently political. It’s about the democratization of knowledge, and there’s growing interest in the concept, also described as “Health 2.0,” defined by Ted Eytan as “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.

I’ve talked this week about changes in political participation engendered by expanding adoption of revolutionary web-based technologies for connection and communication. Healthcare, like politics, is being transformed by the web. Patients are finding robust sources of information about their conditions and sharing knowledge in patient communities. More medical professionals are leveraging the Internet, too, and physicians are beginning to acknowledge the potential for partnership with their patients. started with a white paper instigated by the late Dr. Tom Ferguson and co-authored with several associates who completed his work after his untimely death. Tom spent his professional life advocating self-care and patient empowerment. When the Internet was privatized and the process of mainstreaming began, Tom was clear about the possibility that data networks could revolutionize healthcare. The team of advocates he pulled together to create the white paper was just as passionate about the democratization of healthcare knowledge and process. The group is blogging regularly at the web site, and in the process of creating a Journal of Participatory Medicine.

Are patients without medical training capable of evaluating medical knowledge and having informed opinions about their own medical issues? Is there a danger in potential misinterpretations of medical knowledge found online? Or potential bad advice received from other patients with similar conditions in online patient communties? Similar issues exist for all the online contexts where knowledge is openly shared, hierarchies are flattened – where there’s a democratization of knowledge. From an elite or professional perspective, “a little knowledge” – or knowledge out of the broader context of professional development – “is dangerous.” I can imagine these arguments, but I’m not really hearing them from healthcare professionals. In fact, my experience with physicians has generally been that they are inclined to trust their patients’ thinking and research. After years of study, rather than assuming they know it all, they’re acutely aware that their knowledge has limits.

Online medical information is still pretty limited, and the concept of participatory medicine is still pretty new. There’s also much information that’s considered proprietary and never openly shared – see the Heath Commons proposal, for instance, which discusses how pharmaceutical companies keep their proprietary data close, and how failure to share more of that knowledge impedes development of new treatments.

If you’re not sure whether you think participatory medicine is a good idea, it’s probably because you haven’t felt a compelling need for it yet. You’re one disease away from a much stronger opinion.

Published on: October 15, 2008
About the Author
Photo of Jon Lebkowsky

Jon Lebkowsky writes about culture, technology, media, politics, and sustainability, and has been blogging since the late 1990s.

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