Lifestyle 4 min read

Cancer Survivor Urges Patients To Be Proactive

e-Patient Dave is on a mission to empower patients to own their medical data.

By Sonya Collins featured image Image courtesy Dave deBronkhart

At 56 years old, Dave deBronkart found himself “facing the grave,” he says. Blindsided by a diagnosis of stage 4 kidney cancer in 2007, he joined an online community for people with cancer, where he first heard of high-dose interleukin (IL-2) — a drug that would soon save his life.

Patients in the online group were well versed in the stages, prognoses, and treatments that deBronkart was just hearing of for the first time. They told him that IL-2 only worked for a few people, was offered at a few hospitals, and that those that didn’t offer it probably wouldn’t even mention it.

Luckily, the doctors at Beth Israel Deaconess Medical Center in Boston were already planning to treat deBronkart with the medication. But he couldn’t help but wonder: What if this hospital weren’t one of the few that offered the treatment? What if he had never found the online community of experienced patients who told him about the life-saving medication? Patients who weren’t as proactive as deBronkart — those who just followed doctors’ orders — may have died under these circumstances.

DeBronkart began reading stories of patients who’d been harmed by the passive role the healthcare system put them in. “I was fascinated to learn that there were so many shortfalls in the field that had saved my life,” he says. Many of these shortfalls, he concluded, could be fixed by making patients active drivers of their care rather than passive recipients of it.

Dubbing himself “e-Patient Dave,” deBronkart began blogging at The New Life of e-Patient Dave, where he called for patients to get more involved in their care and for providers to let them. “[Health care] must increase, not decrease, capacity to take action,” he says.

A great example of how the healthcare system can do this is through its handling of patient medical records, deBronkhart says. “If you withhold access to the medical record, would that increase or decrease someone’s capacity to take effective action? Clearly, it’s disempowering.”

In early 2009, more than a year after finishing his cancer treatment, deBronkart decided to lead his readers by example. He bravely clicked a button to upload all his health information from his medical records to a new app, called Google Health, that promised to put patients’ health information in their own control. “At first I had said, ‘There’s no way in hell I’m going to trust Google with my medical records,’” he recalls. But then he realized that Google was offering patients just the type of power that he’d been demanding. “I thought, ‘I want to support that. I want to help seed innovation.’”

Right there in his Google Health profile — between his adolescent bout with acne and the kidney cancer that almost took his life — deBronkhart discovered conditions he’d never had: aortic aneurysm, tumor metastases to the brain, and others. Had he not migrated his records to Google Health, deBronkhart says he would never have seen these errors. So he asked readers, “Do you know what’s in your medical record?”

The blog post found its way to a Boston Globe reporter and, as a result, deBronkart found his way into a national news story about electronic medical records. A week later, at the Health 2.0 Meets Ix (information therapy) conference in Boston, people were coming up to deBronkhart and saying, “I can’t believe I get to meet you.” He was the new face of patient empowerment.

Soon, deBronkart was not only fielding calls from reporters, but also invitations to speak. His first talk, “Gimme My Damn Data” at Medicine 2.0 in Toronto in 2009, positioned him as an outspoken advocate of the people, and by 2010, deBronkhart decided he needed to do this full-time.

It hasn’t been easy. “There’s no business model for patients to get paid to speak at conferences, but that’s what I’ve been doing since February 2010,” he says.

DeBronkart is now an international keynote speaker and academic lecturer. During his TED talk at TEDxMaastricht in 2011, he had audience members chanting along with him in unison, “Let patients help. Let patients help.” After all, it was patients who had first told him about the drug that saved his life — information that he hadn’t found anywhere else on the Internet.

As choices become more and more specific to individual patients due to the rise of precision medicine, patient engagement is becoming more important than ever, deBronkart says. “The day will come, probably in my lifetime, when there will be a range of genetic modifications possible and it will be up to me, the patient, to pick from the menu. So the issue of who is equipped to make those choices is fundamental.”