[BadHumans]

There are several examples of anonymized data not being so anonymized after all and able to be traced back to the person. As far as what could someone malicious do with health records, you have a contingent of people in some states hunting down women for having abortions so that might be something you don't want getting out there. Or you might be someone in a very religious area and you don't want people finding out you're getting AIDS treatment.

[eszed]

Between your comment and others in the thread we've so far got:

- Insurers won't insure you

- Abortion activists will hunt you down

- Religious fanatics will shame you

- Credit rating

Not to downplay those (very real) risks in the slightest, but they are all US-centric problems.

Not sure what over-arching point to make, but it's certainly a set of US-centric problems.

[bpodgursky]

I understand the theoretical concerns in these cases, but IMO it does not weigh heavily against the (conservatively) hundreds of thousands of annual deaths due to hindered medical research.

It's hard to overstress enough how impossible it is to do even basic research across institutional health datasets, even you're a giant organization with a compliance team. It's soul-draining and frankly the reason a lot of smart people jump ship and work in finance or crypto or whatever, where you can accomplish something even if it's goofy.

[BadHumans]

You're not addressing the root concern which is that healthcare is notoriously insecure. Approaching this as "who cares if things get leaked" instead of improving security of records is why getting data is impossible.

[bpodgursky]

That's your root concern, not mine. My root concern is that people are dying for bad reasons.

[BadHumans]

What's my or your biggest concern is irrelevant. Patient data security is why you can't get the data you say you need. That is just a fact and I would think energy is better served towards improving the handling of patient data if you want easier access to that data for research purposes.

[bpodgursky]

I worked at Datavant for 3 years building a network for deidentified data exchange.

[JTyQZSnP3cQGa8B]

Nitpicking but he gave you practical examples of stuff that already happened, not theoretical ones.

[bpodgursky]

Those are both theoretical examples of what people might want do with re-identified medical data. They are not demonstrated harms of things that happened in real life.