Dave deBronkart didn't set out to change the world. All he wanted was a fighting chance to beat the cancer spreading through his body in January 2007.
So the onetime Minnesotan and self-described "data geek" went online to learn everything he could about kidney cancer.
In the process, he found a new calling and a new identity as one of the leading voices of patient empowerment on the Internet: e-Patient Dave.
DeBronkart, 60, has become a symbol of the way the Internet is changing medicine -- for the better, in his view. Patients, he says, are no longer content to sit back, waiting for doctors to determine their fates. They have access to the same information as their physicians -- sometimes more -- and many are playing a more active role in their medical decisions.
Now he's traveling the country, prodding the medical profession to change with the times. "The short answer is: Let patients help in every way you can," he told more than 500 health professionals at a conference last week in St. Paul.
"I think he has an important message," said Dr. Kent Bottles, president of the Institute for Clinical Systems Improvement in Bloomington, which sponsored this month's conference on health care transformation. "People are not going to stop going on the Internet, even if all the doctors wanted that," Bottles added. "He's kind of making a plea that patients are an under-utilized resource in our health care system."
DeBronkart, who chronicles his story on his website, epatientdave.com, was invited to the conference, Bottles said, because he has "credibility" as a cancer patient. "He's also a really smart guy who can speak the scientific language of doctors."
'How can this be happening?'
DeBronkart, a 1968 graduate of Mahtomedi High School, is as amazed as anyone to find himself lecturing to the medical profession. Just three years ago, he was a patient who thought he had been handed a death sentence. Now deBronkart, a technology consultant with a degree from MIT, has given up his day job to spread the word about how doctors and patients can work together more effectively.
DeBronkart remembers the moment that changed his life. His doctor called with the results of a shoulder X-ray: "Your shoulder's going to be fine," he was told, but "there's something in your lung."
DeBronkart, then 56, had just moved to New Hampshire from Savage, where he'd worked for a technology firm. Although he had no symptoms, deBronkart learned that kidney cancer had spread to his lungs, bones and brain.
He Googled his type of cancer, and saw the words: "Incurable." "Outlook is bleak." "Prognosis is grim." The median survival time, he read, was 24 weeks.
"I'm thinking, 'How can this be happening?'"
His doctor handed him a slip of paper telling him to check out the Association for Cancer Online Resources (www.acor.org), a website where cancer patients share information. Within hours, he said, he had found other people battling his disease, and had the names and phone numbers of the top experts in New England.
As a scientist himself, deBronkart was naturally skeptical about online medical advice. He doesn't count himself among the conspiracy theorists who think experts are always wrong and the Internet is always right. "Who doesn't know that there's crap on the Internet?" he asks.
At the same time, he had the motivation to check out the medical literature and ask tough questions. He realized, for example, that even specialists don't have time to keep up with every new medical study, and that promising new advances can take years to make their way into practice.
As he scoured the websites, he would bounce ideas off his own cancer specialist. If the doctor didn't know the answer, at least he was always willing to say "Let's find out," deBronkart said.
He and his doctor settled on a course of action: first surgery, and then a drug called Interleukin 2, which had only about a 13 percent chance of success for his type of cancer. "Not great odds," he noted, "when you're headed down the tube."
But it worked. His tumors began to shrink.
Even today, with his cancer in remission, deBronkart says there's no way of knowing whether he, and his voluminous research, affected the outcome of his treatment. But he knows it boosted him psychologically and gave him hope. "[It's] an enormous difference to have something you can do to try to help yourself, instead of sitting at home powerless," he said.
He rose to fame, as it were, writing a blog about his recovery on E-Patients.net called "The New Life of e-Patient Dave."
Now he's co-chair of the Society for Participatory Medicine, which encourages patients to take active roles in their care. "I went from Stage IV cancer to co-chairman of a medical society," he jokes.
Last year, speaking to another medical gathering, he was introduced as "the patient of the future." Babette Apland, an executive at HealthPartners, thinks there's some truth in that. "I think I sense a revolution," she told him after his talk in St. Paul. As patients become better informed, they're also more motivated. "We in health care are seeing more and more the great potential" in that.
During his cancer battle, deBronkart came across three pieces of memorable advice: Use laughter as medicine, keep doing things he enjoyed (like singing), and eat a high-calorie diet to keep up his weight (pizza for snacks!). Or, as he calls his prescription: "Laugh, Sing, and Eat Like a Pig." That's also the name of his book, which comes out next month.
He knows that many doctors are concerned that patients may misunderstand medical data or demand unproven treatments. Some physicians even get defensive; more than one has snapped: "I'm the one with the medical degree!" The answer, DeBronkart says, is not to brush off patients, but to teach them.
"Acknowledge that people are using the Web," he said. "Like teens and sex, we're doing it, like it or not."
The important thing, he said, is to remember what's driving the patient. It is after all, he said, "the right of a desperate person to try to save themselves."
Maura Lerner • 612-673-7384