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Cancer survivor urges patients to get involved in their health care

Posted Sept. 20, 2012, at 3:26 p.m.
Last modified Sept. 20, 2012, at 7:30 p.m.
Dave deBronkart, known online as e-Patient Dave, is a self-described evangelist for patient engagement in their own health care.
Dave deBronkart, known online as e-Patient Dave, is a self-described evangelist for patient engagement in their own health care. Buy Photo

Dave deBronkart visited his doctor’s office in 2006 with nagging shoulder pain. A subsequent X-ray showed that his shoulder would heal, but incidentally also revealed a shadow on his lung, turning what deBronkart expected to be a routine visit into diagnosis of a rare form of kidney cancer.

Further tests uncovered five tumors that had metastasized to both of his lungs, as well as to some of his bones and tongue.

DeBronkart went online looking for answers. He learned the outlook was bleak — he had about six months to live. He pictured his mother’s face at his funeral and told his daughter and her boyfriend not to get married prematurely just so he could attend the wedding before he died.

Then, patients on an online forum told deBronkart about a relatively unknown treatment for kidney cancer called high-dose interleukin. Most hospitals didn’t offer the therapy, which does nothing for most patients and carries serious side effects, but virtually cures a very small number of cancer victims.

Patients may not know about alternative treatments and clinical trials, or be able to afford them if their insurance doesn’t cover the procedures. But the more informed patients are, the better, according to deBronkart.

He spoke to his doctor at Boston’s Beth Israel Deaconess Medical Center about the interleukin therapy and six months later, deBronkart was healthy. Today, he remains cancer-free and speaks internationally as “ e-patient Dave,” advocating for “participatory medicine,” or better patient involvement in health care.

DeBronkart, of Nashua, N.H., visited Maine this week, speaking Wednesday at the annual meeting of Maine Quality Counts, a regional collaborative working to improve health care in Maine.

“Most doctors today and most patients grew up in a world where all useful information came from doctors,” he said Thursday. “The reality today is that it’s possible for ordinary people to get that information.”

DeBronkart’s doctor “prescribed” that he visit an Internet patient community called ACOR.org, and deBronkart, who formerly worked in high tech, went on to foster a support community online. He encourages patients to connect and learn from one another and avoid acting as passive participants in their own health.

“One of the easiest ways to get involved is ask your doctors for a copy of your records and look for mistakes,” he said.

Almost everyone’s record contains an omission or an error, big or small, deBronkart said. The best time to request records is before a health crisis, he said.

His other practical suggestions: Prepare for your doctor’s visit and write down topics you want to address; ask for an explanation if you don’t understand your doctor’s descriptions or instructions; be on the alert at the hospital during shift changes, when errors and oversights are more likely to occur; and ask your health care team to meet at your bedside during the handoff of your medical information.

“It really is up to you to speak up,” he said.

To watch a video of deBronkart spreaking at a TEDx conference in The Netherlands, visit ted.com/talks/dave_debronkart_meet_e_patient_dave.html.

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