ePatient Dave: voice of the patient

What happens when patients get involved? Better outcomes
By Diana Manos
12:00 AM

He calls himself ePatient Dave - a universal name, and intended to be so, for he would like to represent the "voice of patient engagement."

The name is also a very personal one. His name is Dave, yes, and he's also been a patient. He battled cancer and won, making him keenly aware of what's personally at stake.

ePatient Dave is the founder of a "movement," one that goes on past the current federal and consumer push for patient engagement; a movement that dares to break mores that have existed for as long as there have been physicians and patients.

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It's a collection of cultural rules that have ensured a gap between patients' and physicians' knowledge about the patient's care - contributing, at times, to patients' fears of going to the doctor. It's a fear that also keeps a patient from seeking care, sometimes, and does not encourage a wellness-based focus, most of the time.

ePatient Dave, whose real name is Dave deBronkart, is co-founder and board member of the Society for Participatory Medicine. He helped to launch his fast-growing popularity as the face of this movement with a tale of his own. In deBronkart's first book about cancer, Laugh, Sing, and Eat Like a Pig, he describes how he became an empowered patient, how that helped him beat Stage IV cancer and what healthcare can learn from it.

deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) that had metastasized. His median survival time at diagnosis was just 24 weeks; with tumors in lungs, several bones, and muscle tissue, his prognosis was "grim," deBronkart notes in his Amazon author biography. Laugh, Sing, and Eat Like a Pig is extracted from the real-time journal he kept on CaringBridge.org - unedited - combined with later insights from his discovery of the "e-patient" movement.

According to deBronkart, he received "great treatment" at Boston's Beth Israel Deaconess Medical Center: His surgeon removed his tumors 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.

A year after the diagnosis, Dave was invited by his primary physician, Danny Sands, MD, to join the annual retreat of the e-Patient Scholars Working Group, founded by the late Tom Ferguson MD, who deBronkart describes as "a true visionary."

The group consisted of pioneers, both medical and lay, who have been quietly (and not so quietly) altering the balance of power in healthcare, demonstrating that as the Internet brings patients together with information and with each other, a new world of participatory medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.

Ferguson believed that e-patients are empowered, engaged, equipped and enabled. Dave immediately saw himself in those terms. He became an active blogger on e-patients.net, and took on educating himself as much as he could. He went part-time in his day job in 2009, and left the industry entirely in 2010 to devote full-time to healthcare.

deBronkart has testified in Washington, appeared in TIME, US News & World Report, The Boston Globe, and was named to the HealthLeaders "20 People Who Make Healthcare Better" list.

"This is the first time in my life I've felt I have a calling," deBronkart says, "something I can't get away from. It's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."

According to deBronkart the core issue behind it all is, "people perform better when they're informed better."

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