I used to work at Epic as a software developer. The experience with MyChart isn’t particularly surprising. I generally think that Epic is pretty genuinely well-intentioned, as companies go, but they’re not particularly incentivized to put more than the bare minimum of effort in this process, since the number of patients who want to opt out is very low, and it’s in Epic’s interest for patients to be signed up (not, I think, for nefarious reasons like selling data; Care Everywhere data is covered by HIPAA and misuse would be a serious legal liability for Epic. But having more patients lets them tout their exchange numbers, etc).

Some of this can also probably be said about the hospital itself. They probably slapped together a process needed to meet legal requirements, but don’t put much effort into it beyond that. It wouldn’t surprise me if they simply didn’t have the resources to spare for it.

Had an emergency with a pet while traveling recently. The nearest open emergency vet had a sign in the exam room stating that the visit is recorded. No mention anywhere else. No form. At this point you’ve already driven there, paid an upfront amount/put a card on file, waited potentially an hour or more with a pet in an emergency situation, and are finally seeing a vet. Are you going to say anything at that point and potentially risk getting worse care? I can tell you as someone who cares about privacy I just let it happen. I wrote a review and called around to other places so I know for next time I’m in that area. I know it’s different for vets vs people, but I was very upset about that situation. I can only imagine how frustrating it would be if it came to the data of yourself or your child.

I had to see a specialist for something and they used one of the platforms mentioned in the article. There was no way to not use it. You could opt out of some things, but they said that’s how they provide information and communicate with patients so you had to make an account and do payment and schedule through that system. I sure thought I opted out of the data sharing, but I’m going to check later today what I’m actually opted out of vs what I thought I was.

Almost like one of its purposes is to track women who may seek treatments that are criminalized in her state.

My local hospital now records visits with patients and lets their AI transcribe case notes. Only one of my doctors has been fighting give us the option to opt out of that and even she said they only gave her a reprieve of one year. It’s bad out there right now.

As for mychart, it shares information collected over the years but it does not share corrections. So medications I stopped taking years ago show up in every appointment for every provider and need combed through again and again. Mychart sucks.