The whole idea behind e-patients is moving from the doctor/provider in a paternal role, to the patient and provider working together to provide the proper treatment and therapy for the patient. One of the well-known advocates I have found is Dave deBronkart. The following excerpt is taking from his website.
“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.
He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.
Today: Advocate and Activist
An accomplished speaker and writer in his professional life before his illness, today Dave is actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. This is revolutionizing the relationship between patient and health care providers, which in turn will impact insurance, careers/jobs, quality of life and the distribution of finances across the entire spectrum of health care."
The main organization one should look into is the Society for Participatory Medicine.
The whole idea behind collaborative healthcare is genius. Growing up with a diabetic brother, has helped me realize the need for engaged patients, as well as understand how a physician committed to patient collaboration can improve the health status of their patients.
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