Why medical records search is a priority

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.

MIT Technology Review’s business editor, Antonio Regalado, spoke with deBronkart about how online patient advocacy is changing medicine.

Q: Before there was e-Patient Dave, who was there?

A: 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, a doctor 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?