Cancer survivor Dave deBronkart wants to help patients get more involved and increase patient access to health care information.
In January 2007, American Dave deBronkart got the news that makes every person’s world stop. deBronkart’s doctors told him that he had late-stage kidney cancer that had spread to lungs as well as some bones and muscle tissue. He was looking at a death sentence.
But deBronkart was determined to learn how to fight the disease. At his doctor’s suggestion, he joined an online group for cancer patients. There he learned about high-dose interleukin-2 (HDIL-2), a treatment that manipulates the immune system to attack cancer cells, at the time the only approach known to cure kidney cancer. Not all patients qualify for it, but deBronkart did, and less than a year after his diagnosis, he appeared to be cured. Seven years later he is still well.
deBronkart later was shocked to learn that most kidney cancer patients are not told by their doctors about HDIL-2 as a possible treatment, because the literature is so out of date. His experience gave him a new mission and he plunged into the e-patient movement, which has been gaining momentum over the past several years. The goal of the movement, spreading worldwide through web sites, blogs and online communities, is to help patients become more involved in their own health care by educating themselves and taking advantage of the wealth of information online. Because, very simply, often their lives depend on it.
“Isn’t it interesting that sometimes a patient community knows of a treatment option that some doctors don’t, because the literature is incomplete?” deBronkart said, as in the case of HDIL-2. “But I do know that most people don’t realize they can help improve their outcomes: Everyone assumes their doctors will do everything in their power to scour the earth to find the latest treatments. It’s an unrealistic burden to expect every doctor to know everything.”
The e-patient revolution
For many people, deBronkart, known to readers and fans as e-Patient Dave, has become one of the most familiar voices in the e-patient revolution. deBronkart and others were inspired by the creator and leader of the movement, Dr. Tom Ferguson, who coined the term e-patient to describe people who are “equipped, enabled, empowered and engaged in their health and health care decisions,” according to e-patients.net, the blog of the Society for Participatory Medicine. “He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them.”
Ferguson’s goal was to “advocate informed self-care as the starting point for good health, and to promote a new kind of relationship between knowledgeable medical consumers and medical professionals,” doctom.com noted. He put his own philosophy to work during a 15-year battle with multiple myeloma, during which he researched strategies for treating his cancer and also managed to move a wealth of consumer medical information to the Internet. Ferguson far outlived the life expectancy for his illness, but died unexpectedly in 2006.
His thinking has been welcomed by significant parts of the medical establishment. Fourteen years ago the British Medical Journal published his “Online patient-helpers and physicians working together: a new partnership for high quality health care,” then “The first generation of e-patients” and, in 2005, “From patients to end users.” Even before then, in 1998 the Journal of the American Medical Association published his editorial “Digital Doctoring – Opportunities and Challenges in Electronic Patient-Physician Communication.”
Ferguson’s work and that of others has made it easier for patients to become informed consumers. “I can say with confidence that patients today have access to far more information than they did 20 years ago,” deBronkart noted. “And they have far more personal health tools. Both of those change what’s possible.”
Most of deBronkart’s time now is spent writing and lecturing about being an e-patient and adjusting the relationship between doctors and patients so they work more like a team. “Being an engaged patient does not make me a physician,” he added. “I have become a more effective partner with my doctors, but they know a hell of a lot more than I do. That’s why my book is not titled Patients Know Best – it’s Let Patients Help.”
Starting a blog
deBronkart’s career as a blogger began in late 2007 with the good news from his doctors that his treatment had worked. “That was a wonderful feeling!” He started a blog called “The New Life of Patient Dave,” with no clear idea at first what he would write about. (The blog is still available online, though it’s long been idle.) Two months later deBronkart discovered the e-patient movement, and realized, “Suddenly, I had a purpose for my blog. Throughout 2008 I blogged mostly about what I was learning about medicine. It fascinated me.”
Early in 2009 he began writing about the poor quality of the data his hospital had sent to Google Health. “I didn’t realize that health information technology (IT) was a big subject [at the U.S. federal government level] in Washington, but it was, and suddenly people were inviting me to talk at health policy meetings and to give speeches. I had learned in business how to give a good speech, and that’s what I’ve been doing ever since.”
Among the ways deBronkart is an engaged patient is by carefully choosing his doctors. “I have to drive past a dozen hospitals to get to mine in Boston,” according to deBronkart, who lives in Nashua, New Hampshire, about an hour north of Boston. “I chose that because I’d heard from a relative that academic hospitals are likely to be more up to date. In my case, that helped save my life.”
He also urges families and caregivers of patients to remain at the hospital bedside as long as the patient is there, if possible. “Experience has shown that hard-working hospital people work in systems that can too easily allow mistakes,” he noted. “As in any industry, you can’t blame the people who work in an imperfect system. Again, I say, let patients help.”