Whose Data Is It Anyway? Patient Rights for Implantable Devices

Grateful every day for my amazing friends...heard one today on NPR!

My dear pal Hugo Campos has an implantable defibrillator and no one (manufacturers, providers/payors, clinicians, etc.) will give him access to his own data. I've heard him ask (on stages and in person) the "powers that be", from HHS heads to CEOs of device manufacturers.

Their answers range from "of course you have the right" to "I don't know how we'd do that".  Bottom line is that until there's $$ attached to doing the right thing, it won't get done.

Thank goodness Hugo is of the nicest guys on the planet.  I would have gone postal long ago.

Watch Hugo's TedX Cambridge talk here.