The Rise and Fall of Evidence Based Medicine (1998) [pdf]

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.

> >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.

(2020) Will COVID-19 be evidence-based medicine’s nemesis?

https://journals.plos.org/plosmedicine/article?id=10.1371/jo...

"It is surely time to turn to a more fit-for-purpose scientific paradigm. Complex adaptive systems theory proposes that precise quantification of particular cause-effect relationships is both impossible (because such relationships are not constant and cannot be meaningfully isolated) and unnecessary (because what matters is what emerges in a particular real-world situation). This paradigm proposes that where multiple factors are interacting in dynamic and unpredictable ways, naturalistic methods and rapid-cycle evaluation are the preferred study design. The 20th-century logic of evidence-based medicine, in which scientists pursued the goals of certainty, predictability and linear causality, remains useful in some circumstances (for example, the drug and vaccine trials referred to above). But at a population and system level, we need to embrace 21st-century epistemology and methods to study how best to cope with uncertainty, unpredictability and non-linear causality [16].

In a complex system, the question driving scientific inquiry is not “what is the effect size and is it statistically significant once other variables have been controlled for?” but “does this intervention contribute, along with other factors, to a desirable outcome?”. Multiple interventions might each contribute to an overall beneficial effect through heterogeneous effects on disparate causal pathways, even though none would have a statistically significant impact on any predefined variable [11]. To illuminate such influences, we need to apply research designs that foreground dynamic interactions and emergence. These include in-depth, mixed-method case studies (primary research) and narrative reviews (secondary research) that tease out interconnections and highlight generative causality across the system [16, 17]."

table1: https://journals.plos.org/plosmedicine/article?id=10.1371/jo...

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.

There was a great book about Evidence Based Medicine, from a woman out of Oxford, I read a long while ago. Can't for the life of me remember the name, but Oxford does have a center for "Evidence Based Medicine," and the whole idea has been slowly coming back into fashion.

Instead, all I can recommend is a collection of essays -- loosely -- related to the subject: Where's the Evidence?, Silverman

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On another note, someone who's gone down the pharmaceutical research rabbit hole and concluded a lot of it is "bunkum" (e.g. statins, anti-depressants, and so on), would do well to look into surgery next -- especially that of surgical implants.

Some of worth looking into: joint replacements, joint and spinal fusions, angioplasties.

Of note: spinal fusions were not brought about on any scientific or experimental bases, but on hunches from surgeons (damnable bunch). Many do result in a reduction in pain, but it does bring to question how much of it is simply "placebo." There were a few experiments in this realm of doing double blind (or single blind, it escapes me right now) studies on back surgeries, that showed evidence the placebo effect was involved. The simple act of being put under anaesthesia, and convinced one had gotten "treatment," resulted in reductions in pain for those who came in for spinal surgery.

I do wish more research would be done into the placebo effect, and doctors would stop faffing about in self-righteousness (though having an air of expertise and authority does impact the placebo effect positively). And I don't mean in a "the placebo effect exists and is usable as a treatment" way, but in a "the placebo effect exists, and here is how it works in the body." That would be very interesting. Long ago I read a few papers on the placebo effect in regulating blood pressure via regulation of a certain chemical (it could have been a hormone like renin, but I can't recall). At the time, I thought the autonomic nervous system would be a good avenue to research to better figure this out (it would be a convenient explanation for how the placebo effect works: activating the nerves in the kidneys via the cross-talk from the central nervous system to excrete certain hormones). If it can affect the kidneys, what other bodily systems can it impact? The possibilities are not endless, but rather exciting.

I believe the "placebo effect" is the reason chiropractors are so popular, in spite of there being no real physical evidence as to why their treatments help people.