3 ms·

What exactly is HIPAA’s role here? With or without HIPAA, medical institutions don’t want to share their data, especially not the ones with good data because th

What exactly is HIPAA’s role here? With or without HIPAA, medical institutions don’t want to share their data, especially not the ones with good data because they do their own research.

chimeracoder 3y ago
> What exactly is HIPAA’s role here? With or without HIPAA, medical institutions don’t want to share their data, especially not the ones with good data because they do their own research. I agree that OP's thesis doesn't make much sense. HIPAA provides a legal framework for institutions to share data without liability[0]. It doesn't apply at all to non-"institutional" actors (in the way that OP seems to be using the word "institutional"). HIPAA is an extra cost for the big players, but there's little, if anything, that it prevents them from doing which they would otherwise want to do. [0] More precisely, it provides a framework for capping liability exposure for institutions
- spondylosaurus 3y ago
  As a rule of thumb, I find it's usually safe to dismiss criticism of HIPAA from anyone who misspells it as HIPPA. Not knowing that it's an acronym for Health Insurance Portability and Accountability Act (emphasis on portability there, as you pointed out!) tends to be a sign that you don't know what the hell HIPAA is or is for. "HIPPA," on the other hand, is an ever-convenient boogeyman you can invoke in all kinds of situations.
  - SkyPuncher 3y ago
    Being pedantic. Calling people out on HIPAA/HIPPA is like the warn out slight-of-hand trick you pull at a party and everyone pretends to laugh. I've never seen anyone who actually understands HIPAA get caught up on this. It's a common typo/misspelling.
    - spondylosaurus 3y ago
      You'd think it's a common typo, but I have literally only ever seen it spelled as "HIPPA" by people trying to use HIPAA as a punching bag for whatever happens to be their current pet issue. And those people almost always misspell it. The number of anti-vaxxers citing "HIPPA" as the reason why the local concert hall was trampling on their civil rights by asking to see proof of vaccination was... extremely high.
      - pyuser583 3y ago
        I worked in health insurance for years before I got it right.
SkyPuncher 3y ago
As someone more familiar with HIPAA than the average lay person (but far from an expert). There's a lot that HIPAA does to both restrict access to data and ensure that's it's shared freely among institutions. It's kind of this weird open-secret system that works because people get fired for even minor offense. I don't know what life was like before HIPAA, but after HIPAA it creates a lot of risk aversion. These seems to come out in two ways: * Risk of identifiable information leaking via a published report. Anonymizing data is much harder than most people anticipate. * Internal auditing and appropriate use. "Opening" a patient's record has to either be (1) for their care (2) an explicitly permitted use from the patient (research). That means while an institution must be a steward of their patient's data, they cannot simply use it however they want. This isn't much different AWS's handling of customer databases. While AWS keeps all of the data on their servers, they don't really have access to it.
jvanderbot 3y ago
not op: but possibly ... The free exchange of information would make publicly funded data-driven discoveries more feasible. (?)
- SkyPuncher 3y ago
  That's what standards like FIHR and HL7 do. While interchange is a problem, permissible use is a significantly higher bar.
  - nradov 3y ago
    FHIR is an HL7 standard. While conforming to FHIR makes interchange easier, it doesn't guarantee that the clinical data is accurate, complete, or properly coded. Researchers typically still have to put a huge amount of effort into data cleansing, especially if they need to merge data sets from multiple provider organizations.
- ethanbond 3y ago
  HIPAA is not the impediment, incentives are.
- dekhn 3y ago
  Yes, this is almost certainly true. However, so far we've underutilized the data, for a number of mostly social/incentivization reasons, rather than scientific ones.

What exactly is HIPAA’s role here? With or without HIPAA, medical institutions don’t want to share their data, especially not the ones with good data because they do their own research.

chimeracoder 3y ago

> What exactly is HIPAA’s role here? With or without HIPAA, medical institutions don’t want to share their data, especially not the ones with good data because they do their own research. I agree that OP's thesis doesn't make much sense. HIPAA provides a legal framework for institutions to share data without liability[0]. It doesn't apply at all to non-"institutional" actors (in the way that OP seems to be using the word "institutional"). HIPAA is an extra cost for the big players, but there's little, if anything, that it prevents them from doing which they would otherwise want to do. [0] More precisely, it provides a framework for capping liability exposure for institutions

spondylosaurus 3y ago
As a rule of thumb, I find it's usually safe to dismiss criticism of HIPAA from anyone who misspells it as HIPPA. Not knowing that it's an acronym for Health Insurance Portability and Accountability Act (emphasis on portability there, as you pointed out!) tends to be a sign that you don't know what the hell HIPAA is or is for. "HIPPA," on the other hand, is an ever-convenient boogeyman you can invoke in all kinds of situations.
- SkyPuncher 3y ago
  Being pedantic. Calling people out on HIPAA/HIPPA is like the warn out slight-of-hand trick you pull at a party and everyone pretends to laugh. I've never seen anyone who actually understands HIPAA get caught up on this. It's a common typo/misspelling.
  - spondylosaurus 3y ago
    You'd think it's a common typo, but I have literally only ever seen it spelled as "HIPPA" by people trying to use HIPAA as a punching bag for whatever happens to be their current pet issue. And those people almost always misspell it. The number of anti-vaxxers citing "HIPPA" as the reason why the local concert hall was trampling on their civil rights by asking to see proof of vaccination was... extremely high.
    - pyuser583 3y ago
      I worked in health insurance for years before I got it right.

SkyPuncher 3y ago

As someone more familiar with HIPAA than the average lay person (but far from an expert). There's a lot that HIPAA does to both restrict access to data and ensure that's it's shared freely among institutions. It's kind of this weird open-secret system that works because people get fired for even minor offense. I don't know what life was like before HIPAA, but after HIPAA it creates a lot of risk aversion. These seems to come out in two ways: * Risk of identifiable information leaking via a published report. Anonymizing data is much harder than most people anticipate. * Internal auditing and appropriate use. "Opening" a patient's record has to either be (1) for their care (2) an explicitly permitted use from the patient (research). That means while an institution must be a steward of their patient's data, they cannot simply use it however they want. This isn't much different AWS's handling of customer databases. While AWS keeps all of the data on their servers, they don't really have access to it.

jvanderbot 3y ago

not op: but possibly ... The free exchange of information would make publicly funded data-driven discoveries more feasible. (?)

SkyPuncher 3y ago
That's what standards like FIHR and HL7 do. While interchange is a problem, permissible use is a significantly higher bar.
- nradov 3y ago
  FHIR is an HL7 standard. While conforming to FHIR makes interchange easier, it doesn't guarantee that the clinical data is accurate, complete, or properly coded. Researchers typically still have to put a huge amount of effort into data cleansing, especially if they need to merge data sets from multiple provider organizations.
ethanbond 3y ago
HIPAA is not the impediment, incentives are.
dekhn 3y ago
Yes, this is almost certainly true. However, so far we've underutilized the data, for a number of mostly social/incentivization reasons, rather than scientific ones.