Last week I had the good fortune to meet Dave deBronkart, a man known throughout the world by the simple moniker “e-Patient Dave.”
Dave’s story is widely known: diagnosed with metastatic kidney cancer at age 56 in 2007, he was given a prognosis of six months to live. By scouring the internet and crowdsourcing ideas for newer therapies (and their pitfalls), Dave tried an at-the-time-experimental therapy (with an efficacy of 20% back then) called IL-2.
Happily, it worked. Next year Dave will reach his tenth anniversary of being cancer free.
The world is a much better place with Dave in it. Taking the full measure of his experiences in health care, Dave has become one of the leading voices of participatory medicine — the (not-so) revolutionary idea that patients should be directly involved in their own health care.
He is now a sought after public speaker, thinker, advocate, and collaborator.
He gave a TED talk in 2011 that you can view at the bottom of this post. Last year, I shared a blog post he wrote about his wife Ginny’s amazing experience undergoing quadricep-sparing bilateral knee replacements from orthopedic surgeon Howard Luks.
One thing I always thought was that the term ‘e-patient’ referred to ‘electronic,’ as in ’email.’ In fact, Danny Sands, who has long been Dave’s primary care doctor, is one of medicine’s earliest adopters of using email to correspond with his patients. He also was instrumental in setting ground rules for its use (e.g. never use email in an emergency).
But as I found out in preparing to meet with Dave, the “e” in ‘e-patient’ actually stands for
Dave and the e-patient movement, united behind such advocacy groups as the Society for Participatory Medicine (S4PM) seek to use the collective power of engaged clinicians and patients to find the best available help at the time it’s needed. From the S4PM website:
Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.
There’s no doubt that there are people in my profession who still cling to the ideal of the doctor being the repository of information, who view the patient as more of a passive ‘customer.’
For some patients, too, this is still a comfortable model. And that’s OK, if that’s what you want. But there’s a whole world of engaged docs and patients out there that want to interact in many of the new ways: via email, through social media, using patient portals (special protected systems that allow you to reach your health care team or look at results), even video chats (telemedicine, anyone?).
I learned some of Dave’s interesting backstory: He graduated from MIT, calling his time there ‘vocational school.’ That’s because his best takeaway skill was typesetting — he was trained to typeset the school newspaper. Throughout the 70s an 80s Dave held a number of jobs in the field, where he found one of his best skills was being a translator: explaining engineering-speak to the sales people, and explaining the needs of sales people to the engineers.
I spent more than two hours with Dave — including an interview in a library followed by a lunch. The man is a tour de force. I look forward to continuing our dialogue.