How Being an Empowered Patient Helped Save This Life
Patient Access Dave deBronkart shares how becoming an e-patient helped him overcome his terminal diagnosis.
Eleven years ago, Dave deBronkart was diagnosed with stage 4 kidney cancer and given a life expectancy of about six months. “I went from almost dead to all better in less than a year,” says Dave, also known as e-Patient Dave, who’s doctors attribute much of his remarkable turnaround to participating in his own health care and connecting to an online patient group.
“I would be dead if I had been a disengaged, passive patient, but because I was empowered, I thought about what I could do to help my doctors save me,” says Dave, now a leading advocate for the e-patient movement and the author of Let Patients Help!
Although e-patients use the internet to find medical information and connect with others, the “e” also refers to patients who are empowered, engaged, equipped, and enabled.
Faced with a life-changing decision
At the encouragement of his doctor, Dave joined an online community for kidney cancer patients. It was there that he found out about high-dose interleukin-2 (HDIL-2), a treatment that only works for a few patients and has sometimes-fatal side effects. “I was on the edge of a cliff, and, sooner or later, I was going to fall off,” says Dave. “The question was, if I take this other route, will it throw me off the cliff sooner, or will I survive?”
Dave participated in a clinical trial, proactively asking his doctor how to prepare. When his doctor did not have all the answers, Dave ultimately benefited from the experiences of other patients who had taken HDIL-2 in his online community. “My oncologist said if I had not been so prepared for the side effects, he’s not sure I could have survived,” says Dave.
In addition to receiving crucial information from other e-patients, Dave also benefited from their emotional support. Even if you don’t use the online forum for gathering info, “At the very least, you can connect with other people who are in the same boat as you,” he notes. “I had never known anybody with kidney cancer, so it gave me hope to connect with people who had been through it 10 years ago and were still alive.”
Taking an active role in his health care
Before his diagnosis, Dave, who did everything in his power to assist his doctors, “assumed that they knew everything that was worth knowing.” Later, he realized doctors may not always be aware of all the latest relevant medical information, because it typically takes two to five years for medical research to be distributed.
Dave doesn’t just encourage patients to join online communities and research medical information. He also suggests they ask to see their medical records, which, he says, frequently contain errors.
Although some doctors might be insulted by the idea of patients participating in their own health care, “The e-patient movement is not about patients rejecting their doctors. It’s about patients acting as information bloodhounds, trying to help bring new information to the doctors,” says Dave. “We’re at the stage that the early suffragettes were at in the late 1800s. While some of us are speaking up and saying, ‘Excuse me, I’d like to be involved in my own health care,’ we are being increasingly — but not yet always — accepted by the mainstream.”
Dave’s advocacy is needed more than ever in today’s health care landscape. With an aging population and increasing amounts of people living with chronic diseases, many health care practitioners are seeing an overwhelming number of patients daily. Patient involvement — being proactive and advocating for one’s self — is essential in improving health outcomes and sustaining our health care system.