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Demystifying Medicine One Week at a Time

e-Patient Dave

406px-Dave_deBronkart-20091229Last 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

  • EMPOWERED
  • ENGAGED
  • EQUIPPED
  • ENABLED

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.

2 Comments

  1. e-Patient Dave

    July 25, 2016 at 7:12 am

    John, thank you so much for our time together and this encouraging post. I wouldn’t speak as strongly about my work but I’m glad you find it inspiring and enlightening.

    As I said during our visit, one of my motivations is that I have a sense of how much work and brainpower my clinicians had to invest in their careers to get licensed and move up the clinical ladder to be in position to help save my life, and I really want them to have as fulfilling a career as possible. None of us can help medicine achieve its potential if we leave available resources untapped, and it seems clear today that informed, activated patients can often bring real value to a case. I hope to shed light on the extent and limits patient participation, in a way savvy clinicians find useful.

    There’s one detail I’d like to polish, something that often comes across imprecisely: my prognosis. My oncologist would NOT give me one; he said, correctly, there wasn’t enough data on patients like me. (As I recall, he pretty much said “Besides, we gotta do what we gotta do – give it our best shot.” Without being dramatic he conveyed “This isn’t good but we’ll do what we can. Let’s get to work.”)

    I, though, have “a big appetite for information,” as nurse who managed my participation in the CONNECT trial said, and I googled and googled and sought studies from my patient community. I’ve long since forgotten what trial it was, but the curve (what I now know is the Kaplan-Meier curve) said for someone with my performance status, median survival was 5.5 months, which in my speeches I express as 24 weeks.

    The data was old, at that time, but it was the best available. And boy did it focus my mind.

    I know many patients don’t want to know scary stuff like that, which is of course fine with me. (How can we do patient-centered care without acknowledging that people are different?) But I try to be clear about what my clinicians did and didn’t say, for their benefit at least … at times I’ve heard others question my PCP (the famous Danny Sands) about things I’ve quoted him on! Context context context.

    Anyway, thanks again for an encouraging post. I truly hope the best of medicine can advance as we better understand what’s possible and how to get there.

  2. SCI Solutions

    July 26, 2016 at 5:57 pm

    This is a great revolution in healthcare. Thanks!

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