“When doctors today say patients should stay off the Internet, I know they’re wrong.” — ePatient Dave de Bronkart
Dave de Bronkart (aka ePatient Dave) credits online communities of other patients – and access to clinical research he found on his stage 4 cancer diagnosis – to saving his life more than a decade ago. Fast forward, and this patient advocate has taken his mantra, “Let Patients Help,” to the TedTalk stage and beyond.
As health care continues to shift its focus from ‘patients’ to ‘consumers,’ how can we all be better, more empowered participants in this system that, despite its best efforts, remains closed, difficult to understand, and challenging to navigate?
I caught up with Dave to talk about his definition of what it means to be a ‘consumerist patient advocate’ and get his suggestions for how we can all better partner with our doctors and nurses when it comes to improving our health. The magic ingredient is data – namely, access to it in a frictionless and open way – so that we can be fully involved in learning about our health and able to set priorities when it comes to preserving it.
How did access to health data prevent serious health consequences in Dave’s life? He’s got more than one story to prove this point – oh, and a great little rap (yes, that kind of rap) at the end.
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The simple explanation is a proverb that has been stated in similar ways in various cultures for more than 2,000 years: “The eyes are the window to the soul.”
Not, mind you, “Windows® is the eye to the soul.”
Trust me, I appreciate computer technology and am ever-grateful for the benefits it has yielded me personally and to the patient group I represent, Spontaneous Coronary Artery Dissection (SCAD). Without a computer, search engine, and online community, I never would have met another SCAD survivor, and Mayo Clinic definitely would not be in the weeds of a virtual registry of SCAD survivors, plus a DNA biobank of patients and families from around the globe, at this very moment.
I grew up in locales where catching crabs with a chicken neck on a string and casting a net for shrimp were common practices, and in each, patience is the operative word. If you look at the case of patient-initiated research into SCAD (or any other rarely diagnosed condition), you see a progression that requires patience. The process begins vast – much like seining – and ends personal. For me, what began on AOL.com as my Internet search for any and all references to “heart dissection,” was turbocharged by Google and its evolution. (I remember worrying about what would happen to my computer if I tried this “thing” everyone was talking about. It seemed daring enough to be on AOL instead of mindspring!) But Google led me to an organization, WomenHeart: The National Coalition for Women with Heart Disease, and the online community it runs in partnership with Inspire, the Inspire/WomenHeart Support Community.
And there, on www.inspire.com/groups/womenheart is where our little incubator of SCAD patients formed. Very slowly at first, but thanks to Google’s search and display features, the pace picked up over time and we grew into the hundreds. Then, Facebook was launched, providing a seemingly more personalized venue to interact. Next Twitter, which (although ultra concise at 140 characters per tweet) is an easy way to connect with likeminded souls, similar to that instant bond when walking down the street and sharing “Great game, huh?”