The excellent patient
Dave deBronkart, a 59-year-old high-tech professional in Bedford, called himself "Patient Dave" in 2006 when he began posting comments on Beth Israel Deaconess CEO Paul Levy's new blog. He believed better healthcare could be achieved through active patient engagement. In January 2007, those principles suddenly became personal when doctors discovered a tumor in his lung, the spread of kidney cancer. Reading that his median survival time was only 24 weeks, he marshaled family, friends, and medical staff - in the hospital and on the Internet - to find the right treatment.
Now, more than two years later, a bumpy and public transition of his medical records to Google Health behind him, "E-Patient Dave" has become a recognized online champion of "participatory medicine." Here is an edited version of a recent conversation with him.
Q. How did you respond when your doctors spotted something on your lung?
A. I was googling everything I could to learn about it. The night after the diagnosis was confirmed, I woke up at 1 in the morning and thought, 'I will not see my daughter's wedding.'
Q. What can patients do?
A. Patients can help. Docs are under continuous and increasing time pressure, they don't get paid for research - there's no insurance billing code for it - and the volume of new research to plow through is ever-increasing, and sometimes patients can help dig out information that adds to what the docs have at their disposal.
Q. Wouldn't some people prefer to leave that to their doctors?
A. A lot of patients I talk to don't even want to hear about it. They just want their doctor to be the expert. Me personally? I had all the time in the world.
Q. What motivates you?
A. Some people who advocate for healthcare reform are driven by a bad experience that they had. I had a terrific experience. What drives me is a vision for what will be possible when we patients help our doctors by taking a more active role in our care. 'Patient' is not a third-person word. This is personal. Whether it's you, yourself, or your spouse, your mother, your child, there is a health crisis in your future. And when it hits, you want healthcare systems to work better than they do today.
Q. What's next for you?
A. My daughter's wedding is in two weeks. I know I'm going to totally lose it when I walk her down the aisle.