In case @hmkyale + @drjrums wonder why I got so shirty about JAMA article calling for #SDOH mining from social networks like, say, Facebook (shirty evidence here: threadreaderapp.com/thread/1075892…) allow me to expound. #cyberwoke
First, ICYMI, Facebook's treachery against patient + #MeToo communities in wake of Cambridge Analytica cock-up reveal. PHI revealed in what members thought were walled gardens? NOPE. cnbc.com/2018/07/11/fac… #HBOC #cyberwoke
Then there was the #MeToo community - 10s of 1000s of members - that got its plug pulled when they complained: wired.com/story/how-a-me… #cyberwoke
The beat (and list) of FB's utter inability to manage or secure user's data - of any kind! - continues to flood in. And they do not GAF since our data = their revenue model. And they talk outta both sides of their mouth about that. nytimes.com/2018/12/18/tec… #cyberwoke
Patient communities have been watching this for over a year. So when FB went public with Abnousi's desire to mine health data from social networks, we were pretty much OH HELL NO from jump. cnbc.com/2018/10/10/fac… #cyberwoke
FB keeps blaming roaring headlines about data jacking on their platform as "bugs" and "glitches" - IT'S NOT A BUG, IT'S A REVENUE MODEL. techcrunch.com/2018/12/14/fac… #cyberwoke
To be fair, it ain't JUST the Book of Face. It's also telecoms, and Google, and Twitter, and Amazon, and ALL of the data-slurpers. nytimes.com/interactive/20… #cyberwoke
And as FB vows to "do better" <eye roll> and shut down fake/troll farm pages, it's baby-with-bathwater time out there in Menlo Park. rollingstone.com/politics/polit… #cyberwoke
As @hmkyale + (I'm assuming) @drjrums know, US healthcare has a MASSIVE trust problem. Stratospheric costs, variable access, errors galore, ethics questionable too often. Teaming up w/#data slurpers = #EpicFail at "off with their heads" DEFCON 1 level. #cyberwoke
So pull outta this ethical nosedive before you auger into the flight deck. Just don't do it. Partner with patient communities NOT ON FACEBOOK. Or Twitter. Help us form a citizen governed #data commons. Lives are on the line. #cyberwoke
