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.
In most developed countries, they pull his ID out of his wallet and type it into the nearest computer. National healthcare has many advantages.
> 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.
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?
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.
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 like this test! Yes, passing the copy/paste test should pass this test as well.
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).
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.
Please stop spamming HN to promote your project. We've all seen it and decided whether we are interested.
Let's go. Put your money where you mouth is. Here's my bet: http://longbets.org/793/. Let's see your argument about why YAML is better. YAML is full of unnecessary complexity. We have immense research to back that up. You want to argue do some actual work.
> with little or no apparent work done toward buy-in from the enormous ecosystem of medical provider
Let's see, the past 4 weeks we had meetings with 3 people from NIH, 2 from OHDSI, talked with 5 different healthtech startups, had meetings with researchers from 3 different top tier institutions about collaborating for R1 Feb cycle, and had meetings with researchers from 4 different countries, was on a panel on medical tourism speaking about the importance of portable medical records....you were saying? You might not want to make assumptions because you make yourself look like an ass.
You say you have had meetings, yet that's not actually buy-in. People will take your idea more seriously when you have actual adoption.
Oh and with respect to your second possibility on the long bets link, you really think C, Java, Python, SQL, PHP, JavaScript, and C++ will all fall out of the top 10? Break that out into a separate bet and you'll have people lining up to bet against it.
Agreed. What is does say is I have a lot of confidence in the technical merits. If someone spots a flaw in the technical merits, I'm all ears (i.e. prove why 2-D or 3-D languages are inferior to 1-D languages). If someone can show me a data structure that can be more efficiently (fewer parts) represented by a 1-D language—that would be great and a great argument against 2-D languages. But that hasn't happened yet, which makes me more confident in the technical merits.
> Your project necessitates re-implementing parsers, viewers, and all the other tooling that goes into a new grammar;
It's a lot of work and investment, I know. I'm funding a lot of it myself. But the potential rewards for the world are vast. Sometimes you have to do things that are hard. But the bet is that because this is simpler, the effects will compound. And the evidence so far is pointing to that. For example, the Grammar Tree Language now gives you parsers, highlighters, type checkers, visualizers, synthesizers, go to definition(new this week--thanks ZK!) etc, for a new Tree Language, in very few lines of code relative to existing 1-D languages. If you agree with the statement "software is eating the world", and I'm correct that 2/3 dimensional languages are a better type of software, then I think this could create far north of $1 Trillion worth of value annually for the world. More importantly to me it can help revolutionize medical records and then both medical research and healthcare delivery in the process.
> You say you have had meetings, yet that's not actually buy-in.
I agree! I wish I had more buy-in but it's still very early and we are working on it. The parent comment said "with little or no apparent work done toward buy-in" (emphasis added). We are indeed working toward buy-in.
> Oh and with respect to your second possibility on the long bets link, you really think C, Java, Python, SQL, PHP, JavaScript, and C++ will all fall out of the top 10?
Yes. If not from Tree Languages, from someone else's novel non 1-D languages. This isn't some shooting from the hip either, btw. We've built the world's largest database of programming languages and notations on the planet (over 10k languages, over 1k columns), so we can forecast and simulate the future.