Last thing we should do is have radically open medical data. Some busybody parent could go out and search all the kids in in her kids' school who might have HIV or something. Or imagine all the crazies out there searching for a list of women in their town who have had abortions.
The only thing you do with open medical data is ratchet up the "crazy" in society. In an ideal world where everyone is rational, it's fine. But that world doesn't exist.
They probably get all the data in fragments from different EHR systems, pharmacy records, diagnostic monitors, etc etc and need ways of knowing which records belong to the same patient.
Sure, we may want to have properly-designed legislation to come up with standards across databases that make the use of such sensitive data for combining records less necessary, but we better make sure it's well designed or we could end up slowing down medical innovations.
On the other hand, it's been shown that even without information defined as PII, it's very easy to identify individuals from a combination of other data points. When you're dredging the ocean for correlations, this will just automatically catch everybody anyway, whether intentionally or not.
Last thing we should do is have radically open medical data. Some busybody parent could go out and search all the kids in in her kids' school who might have HIV or something. Or imagine all the crazies out there searching for a list of women in their town who have had abortions.
The only thing you do with open medical data is ratchet up the "crazy" in society. In an ideal world where everyone is rational, it's fine. But that world doesn't exist.