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Comment by slashtom | Hacker News Reader

I completely agree, I work in healthcare data analytics and this is the first step.

My hope would be that the government can step in and make your emr (electronic medical record) something akin to your SSN. It is your data and shouldn't belong to the provider.

It would require an institutional body/government to standardize the EMR and centralize it, allow the individual to share their EMR key to whom they wish (Google, your company, etc) to help provide analytics to tailoring health care to the individual.

Wishful thinking, but I hope Google is able to make significant outcomes with the data to show it is possible.

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Awesome! We are on the same page on a lot of things.

> It is your data and shouldn't belong to the provider.

Agreed! What do you think of the concept of the "Copy/Paste Test"? The idea is a good EHR should allow you to copy/paste your entire medical history into an email in a non-fragile way. If it can't do that, it's not a good EHR. We think this one dimension encompasses a lot of sub dimensions of what goes into a well designed EHR system.

> It would require an institutional body/government to standardize the EMR and centralize it

We're thinking the opposite: decentralized, git backed, concatenative grammars. You eventually probably would indeed have one grammar rise to the top, but the idea is to allow anyone to view, suggest edits, and fork the collection of grammars. Here is the current collection of Pau Grammar files: https://github.com/treenotation/pau/tree/master/grams. Note: this isn't even v1 yet, but the core ideas are there.

> The idea is a good EHR should allow you to copy/paste your entire medical history into an email in a non-fragile way.

On the surface, this seems to be a poor test. Are you using it as a proxy for a patient to be able to get their EHR records out or something else?

> Are you using it as a proxy for a patient to be able to get their EHR records out or something else?

It's a proxy to test a lot of dimensions at once: not only how accessible the records are to the patient (facilitating care, particularly in acute settings), but also how well designed the grammar and schemas are. Well designed grammars and schemas should survive copy/pasting easily. Any errors should be quickly and readily identified with the potential for autocorrections.

VA created a very cool thing called Blue Button (https://www.va.gov/bluebutton/). It is a step toward passing the copy/paste test. Any veteran can download their complete medical history in a single file. The schema isn't there yet and parsing these things is a pain, but a step in the right direction.

Ok, that makes more sense.

I guess initially I would think of this as a round-trip requirement. In theory at least I should be able to download the entirety of my history (in an appropriate format); delete the record on the EHR; re-upload my history and end up with the identical EHR record mutatis mutandis.

Sticking "email" in there had me thinking your were focused on transmission.

> I guess initially I would think of this as a round-trip requirement. In theory at least I should be able to download the entirety of my history (in an appropriate format); delete the record on the EHR; re-upload my history and end up with the identical EHR record mutatis mutandis.

I like this test! Yes, passing the copy/paste test should pass this test as well.

The core of this idea is good; The tricky part about it is both technical and legal impediments to abuse. Specifically as an individual I should be able to share medical history with you (individual/corporation/government/whatever) in a way that is completely granular (I decide what you see and don't), revocable, and non-transferable.

> I should be able to share medical history with you (individual/corporation/government/whatever) in a way that is completely granular (I decide what you see and don't), revocable, and non-transferable.

I agree 100% with the granular.

For "revocable, and non-transferable" I'm not sure how you would do that without making it not worth the trouble, but maybe I'm just not seeing something.

One thing I think solves a number of problems is what we call the "synthesize test". An EHR should be able to synthesize as many medical records as a researcher needs with 1 click. Then you could design software against lots of synthesized records, and move the compute of actual real patient records to the edge, on their devices. Maybe you could do something like that for the "revocable/non-transferable" thing. Patients submit their records to a machine with a ticking expiration, that does the training and emits the trained model and destroys the training data (assuming we can prevent leakage of sensitive info into the model).

re: revocation, non-transferable, etc.

What I am suggesting is that data/learning companies need to start thinking of this sort of data differently, that what you are negotiating is access to the data under certain terms not ownership of the data.

If the individuals retain ownership, we the company should not be able to say sell that access on to a third party (c.f. Cambridge Analytics), or use it in a different way than negotiated for. If the company does not live up to the terms negotiated, the individual should be able to revoke the permission. There are various ways to do this, one being something like you describe.

But in that case, it _really_ belongs to the government, not to you. "Your" SSN isn't yours; the government "owns" the number and uses it to uniquely identify you. I trust my medical records being on paper at my house, not in someone else's database (be it owned by a government or by a company).

Out of curiosity, how does that work when your doctor needs to treat you? And if you suffer cranial trauma and can't remember where you keep those medical records, do you just get worse care from that point forward because your healtcare provider lacks access to your history?

Trusted family members have access to my information, too. I'll admit it doesn't work perfectly if one lives on his own without family.

That doesn't really help in an emergency. You could be dead from a drug interaction before they even know you're in a hospital.

I mean, the same situation could happen even with medical records, unless you give every hospital instant access to everyone's medical info. I assume you're referring to the sort of situation where one is taken to the ER for emergency treatment; even were an electronic record system to be implemented, how would the hospital obtain records from an unconscious person? That's absolutely the sort of situation where doctors must try emergency treatment and have to risk an adverse reaction. I acknowledge there are flaws to the system, but I fail to see how an electronic system mitigates those flaws.

> how would the hospital obtain records from an unconscious person?

In most developed countries, they pull his ID out of his wallet and type it into the nearest computer. National healthcare has many advantages.

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