To add to this as good info to know in the US. There is a push to make patient data accessible everywhere so that businesses don’t hoard it as a valuable commodity (which it is). So there are interconnected networks of businesses that all share data and there must be a treatment use case to access this data.

But of course that network is a giant chain of middlemen data transmitters all transmitting to other middlemen and so on. And they’re all for profit. And they all benefit by sharing as much data as possible at all times because they charge per transaction (per a doctor querying the network prior to a patient’s appointment for example)

So while these middleman companies must attest to sharing data only in specific treatment related cases, the more compliant they are the less profit they make.

The end companies who want the data also profit off of it because they want to use it for research without having to conduct a study, or use it to determine the cheapest outcomes based on drugs and treatments and conditions, or for insurance companies to do all kinds of horrible things with.

Each US state has separate consent laws related to whether your info can be shared with networks as an opt-in or opt-out (opt-out meaning your data is automatically shared unless you explicitly opt out). But that data often still makes it to the middle men who are responsible for not passing it to the final destination.

In a place like China I would be happy with patient info not being silod in some filing cabinet at the provider’s office I grew up at. But of course it’s the US so everything is turned evil and inefficient and insecure.

I work in this industry. Just some awful info. No real point. Everything sucks.