There’s the patient every doctor dreads—the one who shows up holding a sheaf of printouts from the Internet. And then there is Dave deBronkart.
Better known as “e-Patient Dave,” deBronkart has become the Web’s best-known advocate of participatory medicine, storming Twitter and stages in Washington and abroad as a motivational speaker who tells patients to get online, get access to their medical records, and take charge of their health decisions. His most famous line: “Gimme my damn data!”
DeBronkart, who is 61, became a patient advocate after a diagnosis of metastatic kidney cancer in 2007. Given 24 weeks to live, he hit the Web and eventually received a little-used treatment, IL-2. The treatment ended up curing him. Now, as the idea of electronic medicine wins attention in the United States, deBronkart has emerged as an important technology critic.
TR business editor Antonio Regalado spoke with deBronkart about how online patient advocacy is changing medicine.
TR: Before there was e-Patient Dave, who was there?
DeBronkart: I was a two-bit geek, working in Web marketing and analytics.
So can you give me a definition of what an e-patient is?
“E-patient” is a term that was coined in the 1990s by Tom Ferguson, an MD who saw that the vast majority of what we do when we get sick is self-care, and the main limiting factor on how much you can do is how much information you have. When the Internet came along, Ferguson began to identify people who were doing things like finding information online, meeting up with others, and genuinely creating value in health care on the Internet. And so he coined this term e-patient, [for] “equipped, enabled, empowered, and engaged.” I immediately saw myself as a specimen of what he was talking about. I had a blog called The New Life of Patient Dave, and I just renamed myself e-Patient Dave.
What are you advocating for?
The forces of economics have run out of control compared to what consumers need. Just think—we have 50 million Americans that have no health insurance. So now we are being left to make these decisions on our own, and I assert that we can’t do that unless we have access to our medical records.
How did cancer change your thinking?
I had a cancer that is usually fatal. Samuel Johnson in the 1700s supposedly said that nothing focuses the mind like the knowledge that one is to be hanged in a fortnight. So it got my attention. Totally. Like, “There is nothing I am more interested in than what might prolong my life.” That got me to spend all my waking hours looking for assistance, support, information, and so on. I joined a patient community online that had high-quality information and also had empathy, which is a major thing that most people don’t appreciate.
What kinds of changes need to happen in the health-care industry?
No physician, no nurse, can possibly perform to the best of their trained potential if they don’t have all the relevant information at the point where the care is being done.
People talk about how in Las Vegas, if you are there at the dice table, you run out of money and go to the credit window—they know everything about you. They know how many times you’ve been late on payments in the last five years. But if you have a heart attack because you hit it big at the dice table and go to the emergency room, they know nothing about you. What I know is possible is that if we can have that information presented in an organized fashion, in a clear user interface, to the health-care provider, it will improve value.