'Society for Participatory Medicine
e-Patients.net is an ongoing project of the Society for Participatory Medicine.
Participatory medicine is a cooperative model of healthcare that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.
The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels.
You can learn more about our work and join the Society on the website of the Society for Participatory Medicine.'
"I felt I was looking over Thomas Paine's shoulder"
e-Patients White Paper
126 page PDF on the experience and wisdom of patients who research health conditions - and the reactions of their doctors
Why Doesn't My Doctor Know This?
A study published in the Journal of the American Medical Informatics Association reviewed by The National Institute of Medicine reports that there is an unacceptable lag between the discovery of new treatment modalities and their acceptance into routine care. They state, “The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”7,8
In response to this unacceptable lag, an amendment to the Business and Professions Code, relating to healing arts, was passed. This amendment, CA Assembly Bill 592; An act to amend Section 2234.1 of the Business and Professions Code, relating to healing arts, states, “Since the National Institute of Medicine has reported that it can take up to 17 years for a new best practice to reach the average physician and surgeon, it is prudent to give attention to new developments not only in general medical care but in the actual treatment of specific diseases, particularly those that are not yet broadly recognized [such as the concept of tissue hypothyroidism, Chronic Fatigue Syndrome, and Fibromyalgia]...”9
The Principals of Medical Ethics adopted by the American Medical Association in 1980 states, “A physician shall continue to study, apply, and advance scientific knowledge, make relevant information available to patients, colleagues, and the public.”10
This has unfortunately been replaced with an apathetical goal to merely provide so-called adequate care.