Very many things doctors need to be aware of, because the patients life depends on it, are left out when patients move between specialists and physicians, which happens all of the time.
Outbreaks of viral and bacterial illnesses result in thousands of people independently chasing diagnoses and treatment, because the system doesn't share information that could be used to piece together and get ahead of it. Every time my kid gets sick at school, I get to play a game of "What is it? Do we see a Doctor? How much money should we spend?". Lets pretend we know nothing about this and go see a Doctor who hasn't seen anyone else in school, who may provide antibiotics they may or may not need or worse.
Effective prevention methods and early detection of bad treatment are discarded because its so difficult to investigate and connect the dots between interventions and outcomes.
Patient privacy is important, but the system we have today is nothing less than a tragedy. Real damage in emotional, physical, and economic is happening on a grand scale every day in this country. We shouldn't pretend HIPPA is a good thing, or the current system is doing a good job. Its not. We need to radically transform how we operate, and much more open and connected medical records is certainly a part of that transformation.
Honestly, my problem with HIPAA is that it's not really adequate. There are too many loopholes in it. I'd like to see it strengthened quite a lot.
> much more open and connected medical records is certainly a part of that transformation.
As long as the patients those records are about are in full control over their disclosure and use.
I would start freaking the fuck out if my primary care physician gets to sell my diagnosis for money to Facebook, and I don't give a rat's ass if some 3 year old could've been cured of epilepsy if my doctor was able to do so. HIPPAA prevents my doctor from doing so and I'm glad for it.
> I would start freaking the fuck out if my primary care physician gets to sell my diagnosis for money to Facebook,
To play Devil's advocate, do you think Facebook doesn't know who is gay and who has diabetes? If Target can figure out when you're pregnant, Google can certainly figure out on which day you plan to go the abortion clinic. This information is already out there and used in ways we don't like. So maybe we should consider re-working HIPPA so the information can be used by the good guys instead.
You cannot say the protections it provides are overstated if you are not the people who were victimized by a lack of such protections in the first place. I do not want the "good guys" collecting panels on jews. I certainly don't want the "good guys" collecting panels of info on trans kids without involvement from parents. The idea there is a "good guys" in this scenario is ridiculous. The idea that it might save lives is a cold comfort to the status of my minor child's birth control prescription status being accessible to the government.
Who are these "good guys" you speak so highly of? CA gov? FL gov? Federal gov? FBI? Planned Parenthood? Some church?
I'm curious about these mythical "good guys" that you, the NRA, and other people with an agenda repeatedly handwave about.
Anyone who wants to use the records to improve healthcare. There are plenty of these folks in the medical field, based on my time in medical school and brief stint in a medical research group.
I would also include anyone involved in your direct care, i.e. the front-desk personal at the various doctors offices we visit, who have no way of easily obtaining your medical history if you aren't already in their system.
This is so nebulous. Anyone can claim they want to improve healthcare. The removal of abortion access has also been repeatedly been justified as improving healthcare. The Tuskeegee experiments (where they just let black men live with a curable, debilitating disease and continually lied to them about their suffering, some of them to their graves) was justified as improving healthcare. "Wanting to improve healthcare" does not preclude people from horrifically unethical behavior. Get better standards if you want to be accessing the private information of people without their consent.
https://www.hhs.gov/hipaa/for-professionals/faq/authorizatio...
When providers fail to obtain medical histories for new patients that's not due to any legal restrictions. In most cases they simply haven't bothered to implement the open interoperability industry standards which make it easy to exchange such data, or haven't joined networks that facilitate such exchange. For example, the majority of physicians still don't have a publicly listed DirectTrust Direct Secure Messaging address even though they could have one at a very low cost.
https://www.cdc.gov/nndss/about/index.html
And it's not "HIPPA". For some reason, people who are deeply ignorant about what the law actually does also seem to get the acronym wrong.
I see. So if three patients visit three separate physicians (with three separate healthcare systems) with the same illness (outbreak), these records may be aggregated to detect the outbreak? I was under the impression this kind of thing was not possible, or very difficult / limited, and would require some kind of patient authorization, and that HIPAA played a role in this.
(I expect this exists for known serious things like Ebola, but was thinking more directly about things like strep or typical viruses in a school. It seems like the outbreak information is put together after the fact, or after it gets grossly bad)
> For some reason, people who are deeply ignorant about what the law actually does also seem to get the acronym wrong.
Probably that HIPPA reads more like a word than HIPAA.
some are illegal - think threating drug overdose
https://www.wingerdenlaw.com/blog/2020/02/can-you-be-charged...
Mental health is a big deal. For better or for worse, if your employer/licensing org is aware of any mental health issues, then they could adjust how they treat you.
Crappy bosses could use your history as a way to discredit or manipulate you. That's exactly what the CIA does, whenever someone blows a whistle on them.
Some medical conditions can be interpreted by different people, in intensely negative ways. For example, at one time, being left-handed, meant that you were possessed by the devil.
Often sexual orientation/behavior is a part of your medical history.
But I'm suuuuure that no one would ever use this information in a questionable way.
Look at the "mug shot protection racket" sites. These sites leverage personal information that has been made public, as a way to force you to pay them to remove it (and then immediately republish it in another venue).
I guarantee that a number of folks on this very site, run those sites, and sincerely believe there's nothing wrong with it.
No. Just because "I have nothing to hide," does not mean that I get to force others to divulge intensely personal stuff.
And I'm not saying I wouldn't be willing to share. I have consented to such things before. But it should be my decision how much risk I'm willing to shoulder.
(I'm undecided on the whole thing but this argument as stated is bad)
This is one of those cases where when we open things up we realize that just about everyone has or does things that are stigmatized and we have no choice but to stop stigmatizing them, the secrecy and shame are self-reinforcing.
Yeah, it almost never actually works out that way, though.
But the vast majority of people are paralyzed by fear that someone might find out they have hemorrhoids.
Others live in a delusional state of paranoia where "duh gubmint" will use the info against them not realizing that any entity, governmental or otherwise, willing to do so will just ignore privacy laws anyways.
The problem isn't being embarrassed. The problem is suffering real world consequences for certain types of medical treatment, such as problems getting work, renting housing, etc.
Fix that, then? I keep hearing about all of these nightmare scenarios, dreamed up by paranoiacs.
I submit. You are right. Fix THOSE problems instead of killing people.
I'm agreeing with you. What you said happens. We must fix that.
If things are that bad, the entities inflicting these consequences don't care about medical privacy anyways, right?
Not at all. These are all things that used to be pretty common. That's why medical privacy laws were enacted.
> Fix THOSE problems instead of killing people.
That would be ideal, yes. But nobody has figured out a way to do that.
BTW, I don't think your phrasing is helpful to your cause. It implies it's a black-and-white issue when in reality it's a very complex issue with a ton of nuance.
People die as a result of the lack of medical privacy too, after all.
> the entities inflicting these consequences don't care about medical privacy anyways, right?
No, they don't. But they do care about the huge fines and other legal consequences they risk by not adhering to the law.
How about a comprise then? What if we made it so that you could get unrestricted medical record access for any patient for whom you are willing to to guarantee (under severe financial penalty) will not die?
Listen, I'm not saying that this is ethically or morally right. I'm just saying that's the way things actually are (in the US).
I've no doubt that there is some assortment of corrupt laws bought by the medical industry that have enabled these blatantly abusive billing practices. But until shakedown victims actually force the issue and publicize it, then those corrupt laws continue to avoid scrutiny.
Also, I expect insurance companies to honor their contracts.
I could not agree more. This problem absolutely ruins lives. I've seen people who've suffered terrible injuries beg not to be taken to the hospital because it would result in devastating financial consequences.
> I expect insurance companies to honor their contracts.
I agree with this as well. But that's a separate issue than who is legally responsible for the debt.
I believe it is a liability for doctors to know a true medical history, and anything not already being treated can be ignored and re-diagnosed later, which of course is an ideal situation for the insurance and the new provider, because you can charge all over again for those diagnostics.
Case in point, I had two EKGs performed on me, one in urgent care and one in the hospital. It was not too long before I was going in for surgery, and a prerequisite was a "12-lead EKG" readout, so naturally the hospital tried to force me to undergo a new one at enormous cost and inconvenience, and I balked, because I already had two perfectly good readouts in hand. They eventually relented, but it was incredibly difficult for them to admit that the test results were valid and acceptable, and this is all part of the scam, to charge as many times as possible for anything that wasn't performed here and now by us.
Likewise with psychiatry and therapists; I've been through multiple clinics and dozens of counselors, and of course each one produces a mountain of case notes. So I always offer and suggest that I sign a release and have all the prior case notes transferred over so that they get to know me better. The answer is always "no". They want to know nothing beyond what is in the intake forms, that they will spend 5 minutes reading. Then we will start my therapy over from Square One with a stranger and I get to recount all my feelings and life experiences over and over and over again, on my dime.
No, even for longitudinal studies, even with “anonymized” data, the risk is too great for any individual, and to society in general. Ideopathic and non-causal diseases should have some buy-in from patients; a standard waiver might be useful for research use of data. (I’ve signed one.) But in general, no, the restrictions are worth it.