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@medriscoll

CEO at Metamarkets. I ♥ data, analytics, & visualization.

why everyone should be a medical data donor

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What happens to your medical records when you die?  Gil Elbaz thinks you ought to donate them to science, a thought he shared with a technology audience this past week.

It’s a fascinating idea.  But why wait until you’re dead?  In the age of the quantified self, why shouldn’t you be able to give your DNA sequence, your diet, and your disease diagnoses to science while you’re alive?  Unlike your organs, you can donate your data away and yet still keep it.

We have companies collecting vast swaths of data about our buying, browsing, and clicking habits to sell us more stuff.  But when it comes to understanding what behaviors keep us healthy, it’s a rocky landscape of HIPAA-regulated, technologically-challenged health insurers and providers.  We collect so much data about what makes us click, yet so little about makes us tick.

There are pockets of hope.  Sites such as PatientsLikeMe — which as this writing has 122,640 patients and over a thousand conditions — and Ginger.io are green sprouts in a bottom-up, democratizing data movement for health.

Nearly eight out of ten people on the planet earth now own a mobile phone.  These phones send so-called “heartbeat” data to cell towers every few seconds.  Imagine if, instead, we had the true heartbeat data of the humans carrying those phones?  A simple cardiac signal can betray a host of health issues, from stress and aging to a warning of impending stroke or heart attack.

I know that I’m not alone in being willing to give my data to medical science.  If the Fitbit or Jawbone UP had a checkbox that read “donate my data”, and the receiving institution was a trusted one, it could be the beginning of a valuable data bank.  If the Red Cross can convince us to stick needles in our arms to give blood, certainly we can endure bracelets on our wrists to give data.

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