SilverElfin 10 hours ago

The entire healthcare industry is built on anti competitive practices like unnecessary gatekeeping (like needing to see a doctor repeatedly to renew prescriptions), stringent licensing that restricts the supply of people to treat you (each assistant role that reduces costs was fought against), lack of transparency (no explicit up front pricing to enable competition), unnecessary intermediaries (insurers, PBMs, etc), and a whole lot more.

One thing that shocked me is my local university hospital network refusing to tell me what data of mine was stolen in a breach of their systems. They said they do not answer questions about individual patients and just have a generic notice to share. These organizations really think they are untouchable and have no regard for anything except money. Given the kind of culture that is prevalent in American healthcare, I am not at all surprised that the entire industry has dragged its feet on letting patients control their own data. I hope this HHS starts making examples of companies and their executives. But I don’t hold much hope either - in the end, these industry is too entrenched in politics to suffer any consequences.

accrual 10 hours ago

I hope it makes a difference to someone somewhere. I know about healthcare interop and there is a lot of data flow. Whether or not it makes it to the patient is up to the organization, and rules/fines for not allowing it should be enforced.

I'm kind of curious to see what those approximately "less than 1 per day" reports of denied access consisted off. Were they really denied access or was it a bad password, crappy UI, or something else? At least in my experience I've been able to gather the details I need granted it's always through some banal interface.