5 ms·

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.

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.