I watched his TEDx talk several months ago and can’t believe it took me so long to post the video and a link to his blog (in Resources/Blogs). What follows is directly from the TEDx website.
When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online — and found the medical treatment that saved his life. Now he calls on all patients to talk with one another and know their own health data. Dave deBronkart wants to help patients help themselves — by owning their medical data, connecting to fellow patients and making medical care better.