How the e-patient community helped save my life: an essay by Dave deBronkart
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f1990 (Published 02 April 2013) Cite this as: BMJ 2013;346:f1990
- Dave deBronkart, policy adviser on patient engagement
- 1Nashua, New Hampshire, USA
- dave{at}epatientdave.com
In April 2009 I found myself on the front page of the Boston Globe.1 A mere cancer patient, I’d written a blog post about my medical record.2 The Globe’s reaction—on page 1—was my first glimpse of a big question: how can a patient say anything about medicine that’s worthy of attention?
It was the start of an improbable odyssey, leading to speaking engagements at 200 meetings, a Salzburg global seminar on shared decision making, co-chairmanship of the Society for Participatory Medicine, testimony on government policy, events in many countries, and a TEDx talk3 that is in the top half of most viewed ever and has subtitles in 26 languages. Time and again I find myself wondering what people have heard that draws such interest; I wouldn’t have been so bold as to predict it.
I think it is because, although I understand science—I love it, and I’m alive because of it—I also sense a substantial disconnect between what patients value and what medicine offers. And this raises the question: we all agree medicine should provide value for money, but who gets to say what value is?
This is not anti-doctor
I was saved by brilliant science and top notch clinicians. Diagnosed incidentally with stage IV, grade 4 metastatic renal cell carcinoma, I had bone metastases in my femur (which eventually fractured), ulna, and cranium; five metastases in my lungs; and muscle metastases in my thigh and tongue. Yet six months after diagnosis my treatment ended: I’ve not had a drop of anything since. A superb surgeon removed my kidney and adrenal gland; another repaired my femur (twice), …