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MyChart and a Major Hospital Said I Could Opt Out of Sharing My Health Data. But They Didn’t Make It Easy
Patients often face multiple opt-outs, notarization and confusing portal menus before they can limit record sharing, researchers and privacy experts said.
- CalMatters reporter Alex Rosenblat found that opting out of health data sharing is "much more difficult than it needs to be" because deceptive "dark patterns" make refusing consent harder than accepting it.
- Data-Sharing defaults in programs like Epic Systems' Care Everywhere and nonprofit CliniSync automatically enroll patients, requiring them to navigate complex processes to restrict their own medical information.
- One Ohio hospital required 26 steps and a notary to opt out, while other systems bury choices in confusing menus or dense terms of service, making refusal appear onerous from the start.
- Privacy experts warn these practices undermine patient trust; Cason Schmit, a health law professor at Texas A&M University, cautioned that data collected to help people is "now being used in ways that could actively and specifically harm them," citing immigration enforcement misuse.
- Patients can request consent forms 24 to 48 hours in advance and arrive 45 minutes early to appointments, though providers often resist or complicate these opt-out requests despite federal guidance permitting them.
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Patients: All my best tips on how to opt out of data sharing
Even when patients are told they can opt out, medical providers often don’t give patients instructions on how. For patients who are interested in opting out, here are my best tips on how to start.
·New York, United States
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Total News Sources10
Leaning Left5Leaning Right0Center3Last UpdatedBias Distribution63% Left
Bias Distribution
- 63% of the sources lean Left
63% Left
L 63%
C 37%
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