I am not sure where it was (because it was everywhere), but I found a very interesting society, "The Society for Participatory Medicine". I became very intrigued and checked them out (and later joined the organization).
When I went to their "About" section, here is what I found:
"devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials."
I find this very interesting. As of now, I am not an ongoing patient, but I have felt that medicine needs to open up beyond the current structure of Government, Doctors and Insurers. Patients, after all, are the biggest stakeholder in the practice of medicine.
Patient Participation - A gap in need of filling
Among other things, one of the main drawbacks to the progress of medicine in the US and across the world, is the fact that most patients do not enroll in clinical trials. Of course, there are issues with patient education, advocacy, and yes, participation.
Thus, I found what the organization has as a goal, quite intriguing. While there are disease specific organizations and movements such as the American Cancer Society and societies for various diseases, there aren't many out there, explicitly advocating patient participation in general.
Apart from visiting Wikipedia and bugging their Doctors, patients need to pay more attention to how they are being treated, what treatments are being approved by the FDA, what standards the FDA is maintaining, the quality of the Doctors, the devices and the drugs used, Government, who is lobbying who for what (did you know that Bank Of America, a company you bailed out has been contributing to Congressmen and Congresswomen with your tax money?), what Congress is doing...
The list of what patients and the population (a.k.a. future patients) need to do make sure they have a say in the practice of medicine (or practice of health) is of course a mile long...
What else is Participatory Medicine?
Participatory Medicine is also Participatory Health. Responsibility is never a one way street (isn't that the cliche of the week?). Health involves eating right, exercising, staying away from recreational substances of all sorts. If we all did our bit, then we can participate in our health, which would reduce the need for us to participate as much in Medicine.
Interesting Fundraising Techniques
The Society for Participatory Medicine has a very interesting fundraising mechanism. Membership is paid, and if you join the organization in the fiscal first year, you get to call yourself a "Founding Member". I can only envision two results when you come across this - some intrigue and a sense of egoistic fulfillment.
Whatever be the case, I was intrigued enough to make myself a "Founding Member" without founding anything. In any case, I think the organization and it's objectives are very pithy. As a result, I have joined and hope that the organization achieves it's goals.
Fore more information:
http://participatorymedicine.org/about/
http://e-patients.net/
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