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A few thoughts on @patientslikeme: A dozen years ago, I started tracking a startup doing something amazing: crowdsourcing medical experience to create a new body of knowledge about what *really* happens to people. /1
@patientslikeme ‘crowdsourcing’ in 2006 was a new concept (coined by @wired) and taking it to medicine seemed radical and bold /2
@patientslikeme @WIRED The idea that *patients* could combine experiences into meaning - scientifically valid insights - blew my mind. It spoke of a new frontier in medicine. /3
@patientslikeme @WIRED The two brothers - Ben and @JamieHeywood who co-founded @patientslikeme were smart, cocky, and visionary. They were my kind of people. Even though I soon began reporting on them, we were quickly friends, too. /4
@patientslikeme @WIRED @JamieHeywood They were creating 3 amazing things at once: 1) a patient community 2) a data commons, and 3) a novel business selling access to the data *with the full knowledge and input of the community.* /5
@patientslikeme @WIRED @JamieHeywood Like any company, they had a privacy policy - but also an “openness philosophy” that stated the deal up front. Personal medical data yields insights and builds the business which sustains the community. All in the open. patientslikeme.com/about/openness
@patientslikeme @WIRED @JamieHeywood My reporting took best part of a year and saw light of day in the @NYTmag in 2008, a piece I am still mighty proud of. (still love that kicker) /7 nytimes.com/2008/03/23/mag…
@patientslikeme @WIRED @JamieHeywood @NYTmag The lightening bug that was @patientslikeme also sparked at a handful of other new healthcare companies, a couple of which still exist (@23andMe) but most of which are long gone (Green Goose, anyone?) /8
@patientslikeme @WIRED @JamieHeywood @NYTmag @23andMe Collectively they represented the first real attempt to bring digital technology - the internet, the web - to medicine. This wasn’t doc-in-a-box - this was about connecting *people* to improve lives and outcomes. That was radical. It still is. /9
@patientslikeme @WIRED @JamieHeywood @NYTmag @23andMe A hard truth: Selling data sounds lucrative and sinister, but except for Google and Facebook (who sell data to sell ads) there are few buyers and it doesn’t really make $. Especially for health data. One reason why the radical reinvention of medicine still hasn’t happened /10
@patientslikeme @WIRED @JamieHeywood @NYTmag @23andMe But Ben & Jamie took it further than anybody imagined they could - when my NYT story was published they had just 7,000 members! - and they have always been open, honest, and on the side of angels. /11
@patientslikeme @WIRED @JamieHeywood @NYTmag @23andMe This one company from Cambridge, Mass - @patientslikeme - did more to help people understand the potential of connecting people to medicine than the 1,000 startups that came on their heels. They educated the entire healthcare system on the power of patients. /12
@patientslikeme @WIRED @JamieHeywood @NYTmag @23andMe So I just tip my hat to my friends Jamie and Ben Heywood and everyone at @patientslikeme for being there a decade before the rest of us. They have kept fighting the fight right up to this week. They gave patients a voice in medicine, and changed medicine, too. /end
