Uploaded on 1 Jul 2011http://www.ted.com When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online -- and found a medical treatment that even his own doctors didn't know. It saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
participatory medicine and personal health data rights.
Disease and treatment
In January 2007, a routine shoulder x-ray incidentally disclosed a shadow in the lung, which turned out to be metastasized kidney cancer (stage IV, grade 4 renal cell carcinoma). His median survival time at diagnosis was 24 weeks. A member of online communities since CompuServe in 1989, he responded by seeking online resources in addition to receiving treatment at Beth Israel Deaconess Medical Center.
Use of technology during illness
- He joined an expert patient community at the Association of Cancer Online Resources (ACOR).
- He sought information about his disease on web sites.
- Sharing access to his medical record in the hospital computer system, he sought advice from medically knowledgeable family and friends.
- He started an online journal and support community on CaringBridge.
Treatment and recovery
His kidney was removed laparoscopically and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans have continued to shrink for two years, and are presumed dead.
Discovering the e-Patient movement
He became the most active blogger on e-patients.net, a blog founded by the late Dr. Tom Ferguson, which he now manages. In February 2009 Ferguson's e-Patient Scholars Working Group elected him founding co-chair (with his physician, Dr. Danny Sands) of the Society for Participatory Medicine.
At conferences and meetings he is a frequent speaker about the "e-Patient" movement, also referred to as "patient engagement" and "participatory medicine."