Comment by caddemon | Hacker News Reader

Comment by caddemon | Hacker News Reader

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I don't think the blame falls on practicing radiologists, but the OP is absolutely correct that medical data is way too inaccessible. It is often impossible to get your own raw data, and even worse it is sometimes impossible to share that data with another doctor. Two large hospitals in major US cities apparently can't share EEG data because they use different software to read it. Guess who wins when all your prior data gets essentially thrown out? It's not the insurance companies, and it's certainly not you - it's the new hospital.

How realistic it is to have ML involved in reading radiology results in theory I don't know, but the larger point is that in practice it is sure as hell not going to happen until patients have real access to do what they please with their own data. Not only am I pissed I can't have my own EEG data, but I also would gladly contribute it to a database for development of new tools, or any other research study that asked. But there is essentially no way to even do that, at least at either institution I've asked. Just think of all the data that is being utterly wasted right now!

>I also would gladly contribute it to a database for development of new tools, or any other research study that asked

This should be a standard question in the medical file like those related to organ donation.

The number of patients that are interested in viewing or accessing their own data has to be negligible. Last time I got an Xray they actually gave me a DVD of the imaging itself. I remember looking at it, I thought it was neat, but ultimately there was little use in there for me. I dont know what % of patients have bothered to look at it.

Viewing their own raw data may be negligible, but sharing between medical professionals is a relatively common and necessary practice. Currently it is extremely difficult to get one doctor to share medical information with another, and it shouldn't be.

Provider organizations are understandably reluctant to accept removable media from unknown sources due to the risk of malware. Many of the computers that doctors use don't have DVD drives or they're disabled for security.

Cloud is still a thing.

It's not about the patient reviewing their own data as much as it is about the patient having easy access to their data and can easily share that data with other consumers of it (i.e. some AI based interpretation service)

'Easy access' is scary for hospitals because it means increased possibility of HIPAA violations.

The P in HIPAA stands for portability. It should be a HIPAA violation for them to not give me the original data sets for my healthcare when I request them in person.

The data will get better

Healthkit ftw

> patients have real access to do what they please with their own data... contribute it to a database...

Misconception #2 is that there's some "data moat" or whatever.

I am aware there isn't, what I'm saying is there should be - particularly for dense datatypes like EEG that we probably aren't fully leveraging at the moment.

That's false. Both Epic and Cerner, the largest EMR companies, have databases of millions and millions of patients. They're used for research, and stuff.

Yeah but all the EMR data I've seen have just been doctor notes, some prescription info, standard clinical scales, etc. Not that this can't be interesting, but there's not really a major database for richer data types like imaging or EEG (AFAIK)

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