Dave deBronkart has voiced opinions on "meaningful use." He's been tapped by health policy committees for feedback on HIT. On the day of our interview, he spoke with Elizabeth Cohen from CNN. But to his fans, he's just "e-Patient Dave."
The tweeter/blogger/speaker/consultant is one of countless social media success stories, but he's using the attention to promote better quality and standards in health information. "It might be crazy, but people keep telling me I'm compelling in conveying what needs to be done [in health care] and why," he said.
"A Free Replay"
Always an IT guy, deBronkart joined the social media movement early. He helped coordinate online communities back when CompuServe charged hourly rates based on modem speed. When blogs emerged, he helped Paul Levy--an old college friend--launch "Running a Hospital," which shares Levy's experiences as CEO of Beth Israel Deaconess Medical Center, Boston. For the most part, deBronkart stayed in the shadows, commenting on Levy's blog instead of starting his own.
That is, until he became "Patient Dave." deBronkart was diagnosed with kidney cancer--the median survival time was 24 weeks. Desperate for advice, he joined an online cancer patient community and launched a support page for family and friends. The information gleaned from those interactions taught deBronkart how to better interpret the complex information he read online, and steered him to the course of treatment that eventually saved his life.
The Internet has turned health care on its head, according to deBronkart. Patients have access to more information than ever before, and with a vested, personal interest in whatever they're researching, they often learn about a new medication or procedure before it hits medical books. And through social networking, that news can go viral.
Inspired by patient engagement and thrilled to be "all better," deBronkart felt the urge to give back. "I had a free replay in the game of life," he said.
He started a blog now titled "The New Life of e-Patient Dave" (the "e" stands for "empowered and engaged, equipped and enabled," deBronkart said), which highlights health care issues and the power of community.
deBronkart admitted he had no medical knowledge--"The only thing I knew was I didn't know beans about the health care industry," he said--but the blog was simply his take on health matters. He posted links, made comments and amassed a decent following. A few groups asked him to speak at their conference, and they valued his input. "The things I had to say, much to my amazement, turned out to be useful contributions, and people kept asking me to come back and speak more," he said.
Then, on April 1, 2009, a post drew more attention than usual.
The entry was about a recent discovery deBronkart made regarding his personal health record (PHR). His hospital offered to transfer his medical records into his Google Health account, but when deBronkart looked at the result, he found error upon error. The information came from claims data, not his medical files as the hospital had promised. deBronkart's experience showed the danger of mismanaged data, and fueled fervor among patients and health care professionals alike when it wound up on the front page of the Boston Globe.
What started as a simple blog post ended up making deBronkart an authority on HIT issues, and no one was more surprised than the man himself. "It turns out I have a knack for this stuff," he said. "My knowledge of business process change, data issues and social media, interconnectedness and everything just so happens to be a perfect fit for what's going on in health care these days."
deBronkart may not be an expert on health care policy, but he's logged enough hours in doctors' offices to know what patients want, and his 20 years of computer experience have taught why it's so tough to get there. "I know from my business experience what can be done with good quality data that is well-managed," he said. "That's the key."
Managing the sales and marketing database for a cloud computing company, deBronkart has encountered mismanaged data and transfers gone wrong. Now he's applying that knowledge to health care. After months of juggling speaking engagements, blog posts and a full-time job, deBronkart announced--via Twitter, of course--that he's starting a consulting business. Who his clients will be, he's not quite sure, but EHR vendors and hospitals will likely line up for his patient perspective.
When deBronkart started his blog, he didn't expect to become a go-to guy for health care--he wasn't even sure people would read his posts. But it seems social media was the right direction. "It's one of those things where I don't know what shape it's going to take; what form it's going to take," he said. "But for the first time in my life, I feel a calling."
Cheryl McEvoy is an assistant editor with ADVANCE.