Patient struggles to opt out of health data sharing
The gist
CalMatters reporting found opting out of health data sharing is harder than it needs to be.
Only 112 patients have fully left Epic's record-sharing network.
How it unfolded
- 2022Dr. Shira Fischer sought a speech pathologist for her child when virtual appointments became the norm because of COVID-19; the clinic said it would record and use the appointment for training, would not change the consent, and would not proceed if she didn't sign. She eventually found a different speech pathologist.
- May 27, 2026CalMatters and The Markup reporting found opting out of data sharing is much more difficult than it needs to be because deceptive designs or "dark patterns" make it more work to say no than to say yes.
- Oct 13, 2026The UK data guardian said the FDP programme must command trust to succeed, and national data opt-out rates have increased.