Data

Taking on Facebook for Health Data Privacy: Fred Trotter, CareSet Systems

By JESSICA DaMASSA, WTF HEALTH

While patients can often find comfort, compassion, and support in Facebook Groups dedicated to their health conditions, they don’t realize that their identity, location, and email addresses can be found quite easily by other members of their closed group — some of whom may not have well-meaning purposes for that information. Called a Strict Inclusion Closed Group Reverse Lookup (SICGRL) attack, this is a privacy violation of unprecedented magnitude. 

Fred Trotter is one of the leaders of a group of activists co-led by Andrea Downing and David Harlow that is taking on Facebook to correct this health data privacy violation. 

While this interview was filmed at Health Datapalooza in the Spring of this year, Fred has just published an update that details how Facebook continues to ignore the issue and remains unwilling to collaborate on a solution. 

Catch up on the background behind this data privacy issue — currently, one of the most important opportunities we as healthcare innovators have to learn about what NOT to do when it comes to user privacy and sensitive data. 

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