In a world that is becoming increasingly smaller, with people everywhere attempting to break down boundaries and seek out new forms of collaboration in every field, Dave deBronkart is a figure far ahead in the game. In January 2007, when he was told that he had metastasized kidney cancer, he was also told that he had just about 24 weeks to live. His own online research revealed that his median survival was 24 weeks, with outlook “bleak” and prognosis “grim.” But instead of giving in to this diagnosis, he fought back, and how. What he did was so remarkably simple, it’s astounding, and it resulted in the progression of a revolutionary idea. He took the help of people who’d experienced what he was experiencing – patients.
deBronkart, or “e-Patient Dave” as he has come to be known, decided he wasn’t going to sit back and accept the expected outcome. He decided to tackle it head on, with the help of an online patient community who were able to help and support him. It was through what is called “participatory medicine” that he found additional information that supplemented his professional treatments. This kind of approach relies heavily on patients collaborating with clinicians, and often helping out one another as well. In short, the patient takes a far more active role in his or her medical care than traditionally seen – or encouraged, or in some cases even allowed.
His method, in his own words, might seem too “far out” as he tells us with his characteristic brand of dry humor. Journals and blog posts documented his recovery journey, and he’s gone on to give talks the world over about this movement. (See http://www.epatientdave.com/.)
So what does it mean to him to be an e-patient? “Well, for one thing, it means I’m alive, because there’s good reason to suspect that I wouldn’t be alive if it hadn’t been for the specific things I did when I was dying that complemented the work done by my doctors and nurses! I joined a patient community (recommended by my primary), and I learned everything I could from them and anywhere else I could find about how to deal with the disease,” says deBronkart, for whom getting fit and “not going out of business” made it to the list of his 2015 resolutions.
“My oncologist said – ‘You were really sick, and I’m not sure you could have tolerated enough medicine to do the job if you hadn’t been so prepared.’ He was talking specifically about the advice I’d gotten from other patients, especially about how to cope with side effects,” he adds, emphasizing that the help they managed to give him doesn’t exist in the current literature.
When asked if the participatory medicine movement has a downside, deBronkart strongly disagrees. “What downside? Honestly, the only one I know of is that change can be confusing, especially culture change,” he says, referring to the women’s movement, the gay rights movement and the civil rights movement, which have all been “confusing and upsetting” at some point, to some people. Filtering what is the right information might be perceived as a problem by some, but, as he highlights, that is a problem that plagues any field in an age with such readily available information. “How do you battle mistaken beliefs that a whole class of people has, and limits that aren’t real? You introduce facts, of course, but stories are much more powerful.”
His story is one such example; his TED Talk has been viewed almost 500,000 times since it was posted online in mid-2011. It’s a major reason why this kind of collaboration, which some medical professionals might view unfavorably, has also garnered a lot of positive attention. For every doctor who might view this as an infringement on their profession, there are those who not just welcome it, but propagate it.
“There are professionals all over the world who see this increasing doctor-patient collaboration as great news. Remember that in 2012 the Institute of Medicine said medicine needs ‘patient/clinician partnerships’ with ‘engaged, empowered patients.’ Those were their words. So I’d say those professionals who consider it threatening should go talk to the Institute of Medicine,” says deBronkart. He uses a couple of apt examples to illustrate his point. “I mean, if a drowning swimmer climbs onto a raft, it’s no insult to lifeguards, right?
“People have every right to take care of themselves – in fact, when they get good at it, it takes work off the doctor’s shoulders,” he says, adding, “The arc of history points to era after era of citizen empowerment and autonomy. There’s no holding it back.”
So would he say he’s succeeded in transforming the world of medicine in any way? “Long ago I was a hippie who entertained thoughts about changing the world, so now that I’m doing it, all I can say is “Far out, man! Power to the people!” On a more sober note, he adds, “But seriously, all I’m doing is a great big example of ‘pay it forward.’ The e-patient community helped save my life, so I personally saw what’s possible when patients get activated, and I’m thrilled to be able to be making a living sharing those thoughts with others.”
After all, another one of his New Year’s resolutions is to “Spread the word, spread the word, keep spreading the word.” And power to the people it is.