Hospitals and health record systems say patients can opt out of data sharing, but the actual process is more burdensome than getting a visa — the author tested 25 clinics and one required 26 steps, a notary, and a plane ticket.
When the author was pregnant, she noticed a form from her gynaecologist saying a company called Phreesia would mine her health data for marketing. The form was labelled 'Required'. She opted out and kept records, but Phreesia insisted she had consented. After 81 days of back-and-forth, the company admitted she had never authorised it.
That incident set off a year of research into how opt-outs actually work. She registered as a patient at 25 clinics across seven states and spent hundreds of hours reviewing consent forms, privacy policies and marketing paperwork.
How hard is it to opt out of Epic's data exchange?
The author attended University Hospitals in Ohio, which uses Epic's MyChart system. She discovered her data would be shared by default through Epic's Care Everywhere platform, accessible to thousands of hospitals nationwide.
Wanting to opt out, she found no button anywhere in MyChart. Messages to customer service went unanswered; emails to the compliance department drew silence. Only by calling the medical records department did she get confirmation of her opt-out, the same day. But nothing on any page or form told her to do that.
Epic's software lead confirmed that a revoke-authorisation feature was launched in August 2025, but only hospitals that upgraded their software have it. Nationwide, only 112 patients had completed the opt-out.
Enter the notary: opting out of a state exchange
Opting out of Ohio's CliniSync exchange required a notarised form. The author paid $15 at UPS to get it notarised and mailed.
At her appointment, the clinic's receptionist said she didn't know about opt-outs, then relayed a colleague's message: 'It's not feasible to be removed from CliniSync.' In fact, the CliniSync website has an opt-out form, and clinic staff can sign it so patients don't need a notary.
The hospital won't honour its own policy
The hospital's consent form said it could photograph or record patients and own those images for any lawful purpose, but patients could refuse.
When the author emailed the compliance office to refuse, she was told they 'are not able to accept modifications or partial withdrawals' — that she could not opt out of that specific clause.
She calls it a classic bait-and-switch: the form dangles a right, then the hospital says it doesn't really exist.
Why it matters
The default setting for health data sharing is 'unless you fight to opt out', which puts anyone with privacy concerns up against the full inertia of the system. Making opt-outs less hostile is the same thing as lowering the cost of protecting yourself.
Curated from high-quality sources, with concise summaries and key takeaways.
