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Comment by jedberg | Hacker News Reader

This is a strong argument for universal healthcare. If we had universal healthcare in the USA, we'd have to have a common charting protocol and a medical chart exchange.

One thing that AI/ML is really good at is taking very large datasets and finding correlations that you wouldn't otherwise. If everyone's medical chart were in one place, you could find things like "four years before presenting symptoms of pancreatic cancer, patients complain of increased nosebleeds", or things like that.

Of course we don't need universal healthcare to have a chart exchange, and the privacy issues are certainly something that needs consideration.

But the point is, I suspect we could find cures and leading indicators for a lot of diseases if everyone's medical records were available for analysis.

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Universal healthcare and having everyones medial chart stored centrally can be related, but must not be. There are many countries with some form of universal healthcare and no centralized records.

> There are many countries with some form of universal healthcare and no centralized records.

I believe you, but I'm curious how that works. When you go to a random doctor, do they have to request your records from all your other doctors? Similar to here in the USA when you have a PPO?

That certainly used to be the case in Canada 20 years ago, don't know if they've standardized since.

Yes. What’s surprising about this? The two topics seem orthogonal.

Universal healthcare is about who is paying, not necessarily about who is running the service.

https://en.wikipedia.org/wiki/Conway%27s_law

There are several different things here.

One, in some of the countries I know (with universal healthcare and no centralised records) you don't go to a random doctor. You have a declared family doctor and you have to go to them unless they are unavailable, in which case the other doctor you go to has to declare that you couldn't go to your doctor. It's a small hurdle to prevent doctor shopping, but it means people are more likely to always see the same doctor. Specialists are given the relevant information by the family doctor when referring a patient to a specialist, and in most other cases records are not really needed, or the ER will contact whoever to get the information they think they need. It might sound hazardous but in practice it works fine.

Second, some places have centrally-stored records but the access is controlled by the patient. Every access to the record is disclosed to the patient and he has the possibility to revoke access to anyone at any time. That generally goes together with laws that fundamentally oppose any automated access or sharing of these records to third parties.

And third, I don't understand what any of this has to do with who whether healthcare access is universal or not? Universal healthcare without centralised records exists (in France, unless it has changed in recent years, but it at least existed for 60 years or so) and centralised records without universal healthcare could exist (maybe privately managed by insurance companies, since the absence of universal healthcare would indicate a pretty disengaged state).

>in the USA when you have a PPO

This was the last decades way of doing things. The current decade is to stay within the desired charting system. That way you can one-click share data between doctors. Typically you would search for doctors that utilize the same charting platform. EPIC is probably the largest one in US today

Until very recently this was the case in Australia. If you started going to a different doctor you had to sign a form authorising record transfer.

This was somewhat annoying since unlike the UK system, the Australian system is essentially private GPs getting paid for your individual appointments by the government (so called bulk billing), so there's no guarantee that you can go to the same doctor every time.

That is the UK system. GPs are private contractors.

In the UK you have to choose a GP clinic, which you're stuck with until you get a transfer. This isn't the case in Australia, which is the difference I was trying to highlight.

In the Canadian system doctors are still on the whole private practices. They just bill the government (the "single payer") instead of an insurance company. And they bill based on standardized payment formula decided by the government.

Basically, government funded and regulated doesn't mean government run.

There is no standardized EHR system here, despite provincial governments (which are who runs the systems) wasting millions over the last two decades trying to make that happen.

It’s also a strong argument (maybe stronger) for both Federal Funding of health research and encouraging international students to study and complete phDs in the US.

> The study co-authors (from left to right) Sheng Zhong, Junchen Chen, Wenxin Zhao, Ming Xu, Shuanghong Xue, Zhixuan Song and Fatemeh Hadi

>This work is partially funded by the National Institutes of Health (grants R01GM138852, DP1DK126138, UH3CA256960, R01HD107206, R01AG074273 and R01AG078185).

Universal Health Care would be great but we are at a place where the research itself may vanish from the US.

Leaving aside common EHR / central database being orthogonal to universal healthcare, as addressed in sibling comments, having this data centrally still doesn't even make this as easy as you hope.

'patient complains of increased nosebleeds' isn't structured data you can query (or feed to ML) like that. It actually takes a physician having this kind of hypothesis, to then trawl through the records, reading unstructured notes, creating their own database for the purpose - you know, had/did not have nosebleed, developed/did not develop pancreatic cancer within 4 years, or whatever - so then they can do the actual analysis on the extracted data.

Where I think LLMs could indeed be very helpful is in this data collection phase: this is the structured data I want, this is the pile of notes, go. (Then you check some small percentage of them and if they're correct assume the rest are too. There's already huge scope for human error here, so this seems acceptable.)

Universal Healthcare is neither necessary nor sufficient for this. It's mostly about data protection laws why this doesn't work in Europe.

> If we had universal healthcare in the USA, we'd have to have a common charting protocol and a medical chart exchange.

Isn't this exactly what HIPAA was supposed to address?

EHRs (electronic health records) were suppose to be the "common charting protocol" back when ACA passed.

Unfortunately so many junk systems were pushed to the market and the "common charting protocol" is highly dependent on the EHR used by the hospital system.

There _was_ supposed to be some interoperability between EHRs but I honestly haven’t been following it for quite some time.

As for availability of medical history to researchers, I highly doubt this will happen.

Big tech has ruined the trust between people and technology. People gave up their data to G, MS, FB, and others for many years.

We have yet to see any benefit for the common man or woman. Only the data is used against us. Used to divide us (echo chambers). Used to manipulate us (buy THIS, hate that, anti WoKe). Used to control uneducated and vulnerable population. Used to manipulate elections. Used to enrich the billionaire class.

With Donald Trump being president again, there is once again an increased risk of people getting cut off from healthcare due to pre-existing medical conditions. This discourages people from getting tests to see if they have risk for a disease, which worsens average outcomes for themselves and weakens public health as a whole.

While universal healthcare is an ambitious goal, even small improvements to medical care access would have huge hidden effects on public health, and in turn our access to health data.

can't they simply create a law for that instead of universal healthcare.

They who? Simply how?

I hope the author of this comment has another area of expertise.

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