Look, I've been reading about something that happened with a patient and Epic Systems, the company behind MyChart, and I think it matters for everyone in healthcare. This person documented what happened when they tried to opt out of data sharing at a large hospital system in Ohio. They found themselves jumping through hoops that most patients would never tolerate, including needing a notary, getting contradictory information from hospital staff, and discovering that the hospital wasn't even following its own privacy policies.
Here's what caught my attention. According to CalMatters Housing reporting on this story originally published by The Markup, hospitals are routinely using broad consent forms that ask patients to agree to all sorts of data uses, from training purposes to AI development to third-party marketing. When patients push back, they're often told no, they can't get treatment without signing, or they're given vague instructions about how to opt out later that are so complicated they're practically impossible to follow.
The investigation showed that one hospital claimed patients could opt out of having photos and recordings taken, but when this person actually tried to do it, the staff contradicted the written policy and said it wasn't allowed. The hospital uses MyChart, which Epic Systems operates, and the records can be accessed by thousands of other providers across the country through something called Care Everywhere. While this system does have real benefits, like reducing duplicate tests and helping emergency doctors access critical information, it creates a situation where patients lose control of their information.
What I'm finding interesting is that there are actually ways hospitals could limit access if they wanted to. They can restrict searches to certain geographic areas or require extra confirmation steps before certain records are viewed. But most hospitals aren't doing this, and the default seems to be maximum access with minimal friction for the doctors while maximum friction for patients trying to say no.
What I am seeing locally here in the Bay Area is that patients are becoming more aware of these issues, and frankly, it's creating anxiety around healthcare decisions. People are starting to ask me questions about data sharing the same way they ask about interest rates, which tells me this is becoming a real concern in how people evaluate where to get their care.
