PatientsLikeMe or Why We Suck?

TED Presentation from PatientsLikeMe.com: http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html

Perhaps I am wrong, but, at this point, I feel angry.  Angry at all the people who claim that science and rigor are the only way to go dismissing application of simple ideas like crowdsourcing accepting status quo based on “Oh, it’s never gonna work” giving a tip-of-the-hat to the young and naive.  Yet, how the f*ck is it that, a paper is published in PNAS that suggested a treatment for ALS and it takes some small site to invalidate this information fairly quickly while it takes millions of dollars and years to get the same answer?  Of course there are plenty explanations and many will be reasonable.  But I feel like the PatientsLikeMe approach should be embraced and promoted by everyone from foundations to the private sector to government.  Yet, instead, I can’t get my medical data to flow between various entities due to regulations.

I wonder if preventing consumers from effectively sharing their data is something that could be overturned using legal action…

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