5 ms·

Awesome! We need grand innovation in the health records space if we truly want to help people be healthier. I hope Google does something great with this plus Fi

by breck 7y ago

Awesome! We need grand innovation in the health records space if we truly want to help people be healthier. I hope Google does something great with this plus Fitbit. If anyone is interested in our research in this space, we are aiming to radically improve medical records and healthcare delivery/research as well. We don’t have the resources of Google but everything we’re doing is open and public domain: https://pau.treenotation.org https://pau.treenotation.org

slashtom 7y ago
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.
- big_chungus 7y ago
  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).
  - shadowgovt 7y ago
    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?
    - big_chungus 7y ago
      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.
      - JaRail 7y ago
        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.
        big_chungus 7y ago
        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.
        JaRail 7y ago
        > 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.
- breck 7y ago
  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 https://github.com/treenotation/pau/tree/master/grams. Note: this isn't even v1 yet, but the core ideas are there.
  - ska 7y ago
    > 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?
    - breck 7y ago
      > 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/ 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.
      - 7y ago
- ska 7y ago
  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.
  - breck 7y ago
    > 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).
    - ska 7y ago
      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.
throwanem 7y ago
Reinventing YAML badly, with little or no apparent work done toward buy-in from the enormous ecosystem of medical providers whose existing EHR providers you would need to displace in order to make a market for your new thing, seems like a remarkably inefficient way to use time.
- breck 7y ago
  > Reinventing YAML badly Let's go. Put your money where you mouth is. Here's my bet: http://longbets.org/793/ 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.
  - big_chungus 7y ago
    A prediction as to how many tree languages will be in the TIOBE top-ten eight years from now doesn't change the technical merit of your project. You have failed to justify why you feel the need to create a new grammar rather than using JSON, YAML, or TOML (my preference). Your project necessitates re-implementing parsers, viewers, and all the other tooling that goes into a new grammar; this is quite an ask for a domain-specific language with no traction. 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.
    - breck 7y ago
sukilot 7y ago
Claiming that your file format is anywhere near relevant to the quality of health data processing cases suspicion on your competence in both file formats and health records. Please stop spamming HN to promote your project. We've all seen it and decided whether we are interested.
- breck 7y ago
  > Claiming that your file format is anywhere near relevant to the quality of health data processing cases suspicion on your competence in both file formats and health records. Do you have a complete copy of your medical records on your computer right now? Can you copy and paste them into an email to change doctors? How about to participate in a new medical study? Are you able to understand every line of your medical records? Is there a goto definition for every line? Can you synthesize medical records for your research with one click? Can you publish your source code for your medical research paper with synthesized records to avoid the privacy problem? My guess is you, anonymous coward, have no idea what you are talking about. > Please stop spamming HN to promote your project. We've all seen it and decided whether we are interested. Luckily for the world, I'm not going to listen to the opinions of anon coward "sukilot" on HackerNews, and instead am going to keep fighting for the people who are dying because we don't have a great healthcare system yet, but we will.
  - cloverich 7y ago
    I actually enjoyed the parts of your comment that did not include the personal attacks. Overall they weaken your stance and make your arguments feel less genuine. I think you have some really good points otherwise. Consider updating this comment (and ones in the future) to use a more mature tone, and I would imagine you would garner more interest in both your product and your goals.
    - breck 7y ago
      Yeah I agree. Sometimes I'm too rushed to be nice! I've pitched HN a lot on perhaps creating a more restrictive grammar to help keep conversations constructive. I saw that Grammarly actually rolled out something new that shows a simple smiley/frown based upon the town of the content in your textarea. IRL I'm not an argumentative person, but I consider coding/posting on forums to be my equivalent of the gridiron, and I hope people don't take offense when I fight hard on the field. I'm just hoping we can all get to the correct answers the quickest, and so if people think I'm wrong, please provide data or detailed explanations as to why, or else be prepared to take some heat.
GreeneConcerned 7y ago
Great! When do I get paid for the data you stole from me to build your product?

by breck 7y ago

slashtom 7y ago

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.

big_chungus 7y ago
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).
- shadowgovt 7y ago
  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?
  - big_chungus 7y ago
    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.
    - JaRail 7y ago
      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.
      - big_chungus 7y ago
        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.
        JaRail 7y ago
        > 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.
breck 7y ago
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 https://github.com/treenotation/pau/tree/master/grams. Note: this isn't even v1 yet, but the core ideas are there.
- ska 7y ago
  > 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?
  - breck 7y ago
    > 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/ 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.
    - 7y ago
ska 7y ago
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.
- breck 7y ago
  > 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).
  - ska 7y ago
    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.

throwanem 7y ago

Reinventing YAML badly, with little or no apparent work done toward buy-in from the enormous ecosystem of medical providers whose existing EHR providers you would need to displace in order to make a market for your new thing, seems like a remarkably inefficient way to use time.

breck 7y ago
> Reinventing YAML badly Let's go. Put your money where you mouth is. Here's my bet: http://longbets.org/793/ 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.
- big_chungus 7y ago
  A prediction as to how many tree languages will be in the TIOBE top-ten eight years from now doesn't change the technical merit of your project. You have failed to justify why you feel the need to create a new grammar rather than using JSON, YAML, or TOML (my preference). Your project necessitates re-implementing parsers, viewers, and all the other tooling that goes into a new grammar; this is quite an ask for a domain-specific language with no traction. 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.
  - breck 7y ago

sukilot 7y ago

Claiming that your file format is anywhere near relevant to the quality of health data processing cases suspicion on your competence in both file formats and health records. Please stop spamming HN to promote your project. We've all seen it and decided whether we are interested.

breck 7y ago
> Claiming that your file format is anywhere near relevant to the quality of health data processing cases suspicion on your competence in both file formats and health records. Do you have a complete copy of your medical records on your computer right now? Can you copy and paste them into an email to change doctors? How about to participate in a new medical study? Are you able to understand every line of your medical records? Is there a goto definition for every line? Can you synthesize medical records for your research with one click? Can you publish your source code for your medical research paper with synthesized records to avoid the privacy problem? My guess is you, anonymous coward, have no idea what you are talking about. > Please stop spamming HN to promote your project. We've all seen it and decided whether we are interested. Luckily for the world, I'm not going to listen to the opinions of anon coward "sukilot" on HackerNews, and instead am going to keep fighting for the people who are dying because we don't have a great healthcare system yet, but we will.
- cloverich 7y ago
  I actually enjoyed the parts of your comment that did not include the personal attacks. Overall they weaken your stance and make your arguments feel less genuine. I think you have some really good points otherwise. Consider updating this comment (and ones in the future) to use a more mature tone, and I would imagine you would garner more interest in both your product and your goals.
  - breck 7y ago
    Yeah I agree. Sometimes I'm too rushed to be nice! I've pitched HN a lot on perhaps creating a more restrictive grammar to help keep conversations constructive. I saw that Grammarly actually rolled out something new that shows a simple smiley/frown based upon the town of the content in your textarea. IRL I'm not an argumentative person, but I consider coding/posting on forums to be my equivalent of the gridiron, and I hope people don't take offense when I fight hard on the field. I'm just hoping we can all get to the correct answers the quickest, and so if people think I'm wrong, please provide data or detailed explanations as to why, or else be prepared to take some heat.

GreeneConcerned 7y ago

Great! When do I get paid for the data you stole from me to build your product?