5 ms·

I would go further and say that not only the software but also the execution of the software should also be open, akin on a non-financial blockchain database, w

I would go further and say that not only the software but also the execution of the software should also be open, akin on a non-financial blockchain database, with the rules, execution, and decision recorded permanently (under an anonymous ID, of course). Anyone should be able to easily replay the execution. This would allow for citizen monitoring of government actions. If not for this, at least a weekly export of all anonymized processed claims, plus the corresponding logic rules, should be made available on the web, similarly facilitating a local replay. The problem with a scheduled export is that a corrupt state government will gladly change your records for you (in their favor) when you go to court. This is more difficult to do with a blockchain.

striking 2y ago
I would really prefer my health information not be exposed in any way, "anonymized" or otherwise, thanks.
- OutOfHere 2y ago
  I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare.
  - KittenInABox 2y ago
    Can you link where I can license this information?
    - OutOfHere 2y ago
      If you offer to give $10+ million to any health insurance company or hospital IT company, they will gladly give it to you, plus more fees for updated batches. In practice it will cost much less if you negotiate well. There also are commercial data aggregators that specialize in it, that GPT can probably name for you. (I don't want to name names here.) At multiple employers, I have worked with this data from various vendors.
      - Larrikin 2y ago
        Which specific vendors?
    - IG_Semmelweiss 2y ago
      Not sure if you can license it, but its possible to tap into HIEs for a lot of patient information. Or, if you have a deal with a PBM, you could literally see 100% of all prescriptions issues to americans using the PBM. Again, i don't think you can license it, but its a data feed that is accesible incident-to providing other services. You can build on top of that, of course, anyway you want.
  - striking 2y ago
    I think this is plainly untrue in any of the situations relevant to what we're discussing. Some "de-identified" health information can be used or disclosed without restriction under HIPAA, but it needs to genuinely not be possible to correlate back to an individual, which I don't think is something that's possible with what you're describing (at least if prior medical history and decisions factor into the execution of the program). Some health information can be released in the public interest (like for research) or for bettering healthcare operations, but that's not this either. It might be worth taking a look at https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html https://www.hhs.gov/hipaa/for-professionals/privacy/laws-reg.... This is excluding stuff like 23AndMe genome sharing / Ancestry.com law enforcement collaboration, which might be what you're alluding to, but I believe it to be irrelevant in this case.
    - OutOfHere 2y ago
      > it needs to genuinely not be possible to correlate back to an individual What you say is a theoretical goal. In practice, despite good efforts, there is no hard rule imposed by reality that 100% of records will totally remain anonymized.
      - striking 2y ago
        Maybe it's unclear why I've brought this up. I understand it's not possible to keep everything locked down in a way that prevents my information from leaking. And as unfortunate as that is, that's not my concern with your original comment. I do not want that problem made worse. I don't care if it's already kind of bad. I have no idea why the problem already being bad would justify making it worse.
        OutOfHere 2y ago
        I guess you forgot the part where you're a mortal human, and where biomedical data helps discover patterns to solve problems. Just you wait until you get old. Also forgot the part about exposing statewide corruption wrt claims.
- cdumler 2y ago
  I think way he meant a hashed chain: one where the history is tamper proof. The important part is that the data and logic used to process claim is digitally documented and sealed by hash. You get a copy of the hash in your claims. The hash chain is public or has to be given to an independent third-party. If you get into a kicking contest in court, the company they have to reproduce documentation with the hash. The hashing prevents forging the original documents in the process.
deleted 2y ago
[deleted]
KittenInABox 2y ago
Nnnnnnah, I don't want claims to be public. There's no real way to anonymize claims. e.g. someone getting specialized immune therapy in west virginia is pretty damn identifiable. Or someone being paid out in a claim of 300k+ for some highly specific antiviral.
- OutOfHere 2y ago
  > I don't want claims to be public. I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare. > someone getting specialized immune therapy in west virginia is pretty damn identifiable. Yes, despite the best anonymization, some can still be identified, but it will take significant effort, and be limited to a very small number of people, like the one in WV. Overall though, the ratio of benefits to harms from transparency would exceed 999:1.
Terr_ 2y ago
> blockchain [...] replay That's burning down your house to kill a spider. Even in a closed system infinite replay-ability is a big headache, and adding "blockchain" adds a hundred new problems. There's already legal system which is a direct dependency, and it is more efficient and manageable. (Yes, that's right, the US legal system actually looks sane by comparison.) Instead, make a legal requirement that patients (and sometimes other stakeholders) can demand the data/logic behind the company decisions. If you still want very tamper-proof write-only records, that can be done way more easily/quickly/cheaply with an old-school distributed database with fixed trusted nodes, run by multiple institutions that are not likely to conspire together.
- OutOfHere 2y ago
  > make a legal requirement that patients (and sometimes other stakeholders) can demand the data/logic behind the company decisions. Huh. This is already available, and it never works in the interest of the patient. Unless one has expensive attorneys, no individual has the time and patience to jump through all the hoops needed to get it to work. The point is to eliminate friction completely. I do reiterate that scheduled data+logic exports from the government would alternatively also help, allowing the execution to similarly be replayed. A problem with a scheduled export, however, is that a corrupt state government will gladly change your records for you (in their favor) when you go to court. This is more difficult to do with a blockchain.
  - troupo 2y ago
    Ah yes, because blockchain is the 100% true source of ultimate truth. Despite the little overlooked fact that data in it will be input by external systems and people.
    - OutOfHere 2y ago
      If someone receives a letter in the mail with a claim rejection that contradicts what the blockchain says, that then is a very easy win in court.
giantg2 2y ago
It shouldn't be auditable by anyone. There should be an audit trail though, and it should be available to the subject of that process on request.
- OutOfHere 2y ago
  That would be something, but the issue is that most people don't have the time or capacity to audit their own records, or to hire an attorney to escalate it. Journalists on the other hand specialize in this; they can audit everyone's records and expose wrongdoing at a state level.
  - giantg2 2y ago
    A simple request for the audit record is absolutely something that consumers should be able to do. There's no guarantee that journalist is going to look at your record to get you help. It won't help in edge cases and those people will still be screwed.
    - OutOfHere 2y ago
      > There's no guarantee that journalist is going to look at your record The journalists look at aggregates first, and then individuals help tell the story. The point is that both individual-audit-records and full data+logic exports serve their unique purpose. Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community.
      - giantg2 2y ago
        "Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community." No. You can't guarantee anonymity. If you want to have someone audit them, use the GAO or similar.

striking 2y ago

I would really prefer my health information not be exposed in any way, "anonymized" or otherwise, thanks.

OutOfHere 2y ago
I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare.
- KittenInABox 2y ago
  Can you link where I can license this information?
  - OutOfHere 2y ago
    If you offer to give $10+ million to any health insurance company or hospital IT company, they will gladly give it to you, plus more fees for updated batches. In practice it will cost much less if you negotiate well. There also are commercial data aggregators that specialize in it, that GPT can probably name for you. (I don't want to name names here.) At multiple employers, I have worked with this data from various vendors.
    - Larrikin 2y ago
      Which specific vendors?
  - IG_Semmelweiss 2y ago
    Not sure if you can license it, but its possible to tap into HIEs for a lot of patient information. Or, if you have a deal with a PBM, you could literally see 100% of all prescriptions issues to americans using the PBM. Again, i don't think you can license it, but its a data feed that is accesible incident-to providing other services. You can build on top of that, of course, anyway you want.
- striking 2y ago
  I think this is plainly untrue in any of the situations relevant to what we're discussing. Some "de-identified" health information can be used or disclosed without restriction under HIPAA, but it needs to genuinely not be possible to correlate back to an individual, which I don't think is something that's possible with what you're describing (at least if prior medical history and decisions factor into the execution of the program). Some health information can be released in the public interest (like for research) or for bettering healthcare operations, but that's not this either. It might be worth taking a look at https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html https://www.hhs.gov/hipaa/for-professionals/privacy/laws-reg.... This is excluding stuff like 23AndMe genome sharing / Ancestry.com law enforcement collaboration, which might be what you're alluding to, but I believe it to be irrelevant in this case.
  - OutOfHere 2y ago
    > it needs to genuinely not be possible to correlate back to an individual What you say is a theoretical goal. In practice, despite good efforts, there is no hard rule imposed by reality that 100% of records will totally remain anonymized.
    - striking 2y ago
      Maybe it's unclear why I've brought this up. I understand it's not possible to keep everything locked down in a way that prevents my information from leaking. And as unfortunate as that is, that's not my concern with your original comment. I do not want that problem made worse. I don't care if it's already kind of bad. I have no idea why the problem already being bad would justify making it worse.
      - OutOfHere 2y ago
        I guess you forgot the part where you're a mortal human, and where biomedical data helps discover patterns to solve problems. Just you wait until you get old. Also forgot the part about exposing statewide corruption wrt claims.
cdumler 2y ago
I think way he meant a hashed chain: one where the history is tamper proof. The important part is that the data and logic used to process claim is digitally documented and sealed by hash. You get a copy of the hash in your claims. The hash chain is public or has to be given to an independent third-party. If you get into a kicking contest in court, the company they have to reproduce documentation with the hash. The hashing prevents forging the original documents in the process.

deleted 2y ago

[deleted]

KittenInABox 2y ago

Nnnnnnah, I don't want claims to be public. There's no real way to anonymize claims. e.g. someone getting specialized immune therapy in west virginia is pretty damn identifiable. Or someone being paid out in a claim of 300k+ for some highly specific antiviral.

OutOfHere 2y ago
> I don't want claims to be public. I don't think you realize this already happens. It is already available to hundreds of organizations, both domestic and foreign. Any organization can license it really at a price. What I said would only democratize it, also mandating an appropriate level of anonymization which is currently inconsistent or missing. Also, think of the bigger picture, of the clues such data will yield for advances in healthcare. > someone getting specialized immune therapy in west virginia is pretty damn identifiable. Yes, despite the best anonymization, some can still be identified, but it will take significant effort, and be limited to a very small number of people, like the one in WV. Overall though, the ratio of benefits to harms from transparency would exceed 999:1.

Terr_ 2y ago

> blockchain [...] replay That's burning down your house to kill a spider. Even in a closed system infinite replay-ability is a big headache, and adding "blockchain" adds a hundred new problems. There's already legal system which is a direct dependency, and it is more efficient and manageable. (Yes, that's right, the US legal system actually looks sane by comparison.) Instead, make a legal requirement that patients (and sometimes other stakeholders) can demand the data/logic behind the company decisions. If you still want very tamper-proof write-only records, that can be done way more easily/quickly/cheaply with an old-school distributed database with fixed trusted nodes, run by multiple institutions that are not likely to conspire together.

OutOfHere 2y ago
> make a legal requirement that patients (and sometimes other stakeholders) can demand the data/logic behind the company decisions. Huh. This is already available, and it never works in the interest of the patient. Unless one has expensive attorneys, no individual has the time and patience to jump through all the hoops needed to get it to work. The point is to eliminate friction completely. I do reiterate that scheduled data+logic exports from the government would alternatively also help, allowing the execution to similarly be replayed. A problem with a scheduled export, however, is that a corrupt state government will gladly change your records for you (in their favor) when you go to court. This is more difficult to do with a blockchain.
- troupo 2y ago
  Ah yes, because blockchain is the 100% true source of ultimate truth. Despite the little overlooked fact that data in it will be input by external systems and people.
  - OutOfHere 2y ago
    If someone receives a letter in the mail with a claim rejection that contradicts what the blockchain says, that then is a very easy win in court.

giantg2 2y ago

It shouldn't be auditable by anyone. There should be an audit trail though, and it should be available to the subject of that process on request.

OutOfHere 2y ago
That would be something, but the issue is that most people don't have the time or capacity to audit their own records, or to hire an attorney to escalate it. Journalists on the other hand specialize in this; they can audit everyone's records and expose wrongdoing at a state level.
- giantg2 2y ago
  A simple request for the audit record is absolutely something that consumers should be able to do. There's no guarantee that journalist is going to look at your record to get you help. It won't help in edge cases and those people will still be screwed.
  - OutOfHere 2y ago
    > There's no guarantee that journalist is going to look at your record The journalists look at aggregates first, and then individuals help tell the story. The point is that both individual-audit-records and full data+logic exports serve their unique purpose. Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community.
    - giantg2 2y ago
      "Anyone should be able to use the data+logic to replay the execution, whether for oneself or for the entire community." No. You can't guarantee anonymity. If you want to have someone audit them, use the GAO or similar.