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A conference organizer emailed to ask for advice about topics, speakers, and panelists for an event focused on patient-controlled data sharing. Here are some of the ideas I shared (thread)...
The @quantifiedself movement is full of people with ideas about capturing and controlling their own data, then using it to solve problems quantifiedself.com
The @Data4BlackLives community is a creative, critical group of engaged scientists, technologists, activists, and organizers around the use & misuse of data d4bl.org/conference.html
My blog is my outboard memory and the first place I send people when they ask, "What do you know about..." or "Who do you know who..." Example: susannahfox.com/2019/02/04/a-t…
You can't go wrong with a panel like this one (or any of the expert commenters) susannahfox.com/2018/10/22/dat…
This discussion about health data started in 2011, continued in 2017, and is relevant today: susannahfox.com/2017/10/16/und…
Please add to this thread with YOUR ideas & suggestions for topics to cover & people to invite to speak at a meeting about patient-controlled data sharing (and yes, it's OK to self-nominate :)
Thanks to everyone who has replied with ideas for a meeting about patient-controlled data sharing! Collected them here & will share with the conference organizer: wke.lt/w/s/gspKb
Source for that gorgeously geeky health data quilt: Griffin Weber, @mandl & @zakkohane jamanetwork.com/journals/jama/…
