TEPR's advocacy for online resources includes a story of survival
The effort to develop social networking tools for healthcare took a personal turn at this week's TEPR+ conference in Palm Springs, Calif.
During Monday's opening session of the Medical Records Institute's Towards the Electronic Patient Record (TEPR+) conference, attendees were introduced to Dave deBronkart, a Nashua, N.H. businessman who recently survived renal cell cancer - and who attributes his victory in part to being an ardent Web surfer.
deBronkart was diagnosed in 2007, at age 57, when a tumor was spotted in his lung during a routine shoulder X-ray. The cancer was later found to have spread from his kidneys to his lungs and other parts of his body. In researching his condition online, he said, he learned that he had about 24 weeks to live.
deBronkart's physician, Danny Sands, MD, of Brigham and Women's Hospital in Boston, had earlier directed deBronkart to the hospital's PatientSite interactive Web site, seeing it as a means of keeping in touch with his patient when he wasn't in the office (and when deBronkart moved to Minnesota for a few years). Following the cancer diagnosis, Sands connected deBronkart with acor.org - an online network organized by the Association of Cancer Online Resources.
"I lurked for two or three days, listening to what other people were saying, before deciding to post a message," deBronkart said. Within hours of his first posting, he said, he was in touch with other cancer patients, sharing advice and resources.
"I needed to know what my options were," he said.
deBronkart learned of a risky treatment for renal cell cancer using Interleukin-2. He also learned that the side effects to the intravenous treatment were "often severe and rarely fatal." Within days of posting a request for information on acor.org, he said, he received 15 firsthand accounts.
During his treatment in Boston, deBronkart kept friends and family notified of his progress through a page on CaringBridge, an online portal for those undergoing medical treatment. He posted notes, photos and traded messages.
This past year, deBronkart learned that one of the five tumors in his body had vanished and the other four are shrinking. He has begun a blog ("e-Patient Dave"), extolling the virtues of the active, Web-educated healthcare consumer, and will do something this summer that he didn't think he'd live to do - walk his daughter down the aisle at her wedding.
deBronkart's story is a relevant lesson not only to consumers but to physicians as well, said Sands, as it points out that "'patient' is not a third-person concept."
"Forget the concept that doctors know everything and patients know nothing," he told the audience of some 200 TEPR attendees, about half of them physicians. "Physicians have to learn how to work with patients. Connecting technology is empowering not only to patients ... but to physicians as well."
Sands pointed out that a well-informed patient can help a physician in establishing a healthcare agenda - as long as both patient and physician are willing to use Web resources to their advantage. To deBronkart, that includes being able to "filter the good from the garbage."
deBronkart also pointed out that his Web journeys taught him just how much physicians are expected to learn and know about healthcare.
"Access to online information gives me a greater appreciation of physicians," he said.