, 12 tweets, 19 min read Read on Twitter
You going to Health Datapalooza next month? YOU WANT TO, you do! It's never just a nerd herd, and this year you'll get #cyberwoke. Settle in, I'll spin the tale. #HDPalooza #epatient #datarights
First, you need to know that as awesome as social media is for #epatients, #research teams, #healthpolicy wonks, #datascience peeps, and other members of the #HDPalooza tribe, there IS a dark side. #cyberwoke #dataprivacy #HumanRights
And then there's this, wherein @BraveBosom with @fredtrotter's super-hacktivist superpowers unmasked #epatient data privacy betrayal by FB in Closed Groups: cnbc.com/2018/07/11/fac… #cyberwoke #HDPalooza #dataprivacy #humanrights
There's been intrigue, deep conversations in secure comms channels, we might even need DECODER RINGS! In all of it, the risk to #healthdata privacy on Facebook has been clear: patreon.com/posts/facebook… #cyberwoke #HDPalooza #humanrights #datarights
Rather than just scream about problems, tho, our intrepid team of geeks with soul (again HT @BraveBosom + @fredtrotter) OFFERED A PATH TO A SOLUTION: missingconsent.org #cyberwoke #HDPalooza #humanrights #dataprivacy #epatient
Story is still breaking/unfolding. Definitely plan to be at #HDPalooza for our #cyberwoke panel discussion "Nothing about Us without Us: Toward Collective Self-Governance of Patient Support Groups' Data on Social Media" academyhealth.confex.com/academyhealth/… #epatient #datarights
And also at #HDPalooza, there will be a #cyberwoke unconference session to start tackling SOLUTIONS for #epatients and others who want to build community, data governance, data privacy WITHOUT being "the product, not the customer" in the #dataeconomy
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