Patients Face Complex Hurdles to Opt Out of Hospital Data Sharing Programs
A year-long investigation reveals that opting out of health-data sharing through systems like Epic’s Care Everywhere and Ohio’s CliniSync requires navigating opaque procedures, multiple contacts, and even notarized forms.
Through a systematic review of consent documents at dozens of medical facilities, the investigation found that patients are routinely asked to agree to broad data-sharing arrangements, including the transfer of records via Epic’s Care Everywhere platform and the Ohio-based exchange CliniSync. When the author tried to decline at University Hospitals in Westlake, Ohio, the process involved more than two dozen steps, a notary, and a trip to Las Vegas, yet the hospital still refused to honor the opt-out policy.
Contacting Epic’s Care Everywhere team revealed that a true opt-out is possible only after the provider’s software is updated, otherwise patients must call each medical-records office. CliniSync’s opt-out requires a notarized form, a cost and time burden that many patients cannot meet, and staff often give inaccurate guidance. Experts cited in the piece argue that such opaque practices erode trust and call for regulatory changes to eliminate undue burdens on patients seeking privacy. The report also highlights cases where hospitals claim patients can refuse ownership of photos or recordings, but staff deny that right, illustrating a pattern of misleading consent language across the health-care system.
Why it matters
Understanding the difficulty of opting out highlights privacy risks and the need for clearer patient consent standards.
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