"HIPPA has made it basically impossible to do science in Medicine without being part of the establishment"
I was able to get access to, and use, HIPPA data as a graduate student working in a field most of the "establishment" dismisses as either useless or confusing.
"The scientist responsible for the discovery and treatment of an issue, can't even legally practice."
I work with a half-dozen practicing physician-scientists.
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.
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.
> 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
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.
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.
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.
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.
HIPAA (not HIPPA) actually makes data more portable, not less. It also only applies to a subsection of the medical research industry. A great deal of discoveries don't involve HIPAA-covered data at all.
> >HIPPA has made it basically impossible to do science in Medicine without being part of the establishment
I really don't follow this line of reasoning at all.
If anything, HIPAA makes it really hard for "the establishment" to do medicine. It actually doesn't apply to non-"establishment" actors at all, because they're largely independent entities that are not subject to HIPAA by law.
>HIPPA has made it basically impossible to do science in Medicine without being part of the establishment
>The medical cartels hate change, its bad for business, they actively lobby against change and competition. They want authority based medicine.
>The scientist responsible for the discovery and treatment of an issue, can't even legally practice.
We should entirely be blaming the medical cartels here. They have been terrible for our health, technology, and wallets.