Why is heathcare privacy valuable to individuals? Should HIPAA be relaxed?

[SamuelA]

@Voyager

I’m not talking about number of records. However, if you know sampling theory, accuracy does not grow linearly with number of samples. Assuming that your samples are taken in an unbiased (in the data sense) 2,000 - 3,000 is usually enough.

What I meant by dumpster diving though is that you don’t look at tons of data, see some kind of trend, and think you’ve demonstrated anything. Any data set is going to have some apparent correlations between variables about something. You use the apparent effect as a hypothesis, design an experiment with new data, and go from there.

For the former, this requires access to all data per my OP. Read my OP again, I point out that voluntarily releasing of data does make available medical data in the range of numbers you name, but voluntary releases bias the data.

For the second, this is no longer true, there are many other ways.

[Telemark]

@SamuelA

EXACTLY. It already is this, so it doesn’t make any difference if medical records are also out there. You are already being discriminated against for tons of illegal reasons.

It doesn’t make sense to give vital information to people who can’t be trusted. So yes, it does make a difference.

[Max_S]

@Qadgop_the_Mercotan

Not precisely true. If I am one of your treating physicians, I can request records from other providers past and present, and get that info without your consent, unless it is for records on psychiatric disease or HIV infection.

I do this multiple times a week, and get those requested records without a release signed by the patient without issues. That is the law; a treating physician doesn’t need patient permission to obtain most past records. Your submitting to treatment in the first place is implied consent for your treating physician to access past medical info.

HHS.gov cite: Does the HIPAA Privacy Rule permit doctors, nurses, and other health care providers to share patient health information for treatment purposes without the patient’s authorization?

However, where I work, almost none of the other medical offices permit the release of medical records to our office without a signed release on file. But that is an office policy, not the law.

~Max

[Max_S]

@SamuelA

I feel like all medical records should be kept in massive cloud databases (“google health”), not socked away in individual clinics and hospital networks, and accessible to all authorized physicians who are seeing a specific patient. (no more filling out the same goddamn form every doctor you go to, and patients will no longer forget critical information in the “have you EVER” section)

Logistically, how do you propose this be accomplished? Before you start to answer that question, can you work out a baseline as to how much data would need to be stored in such a database? Our teeny practice alone creates at least a couple gigabytes of data per day. One of the contributing factors is that we use a hybrid system (paper and EMR) our machine scans images, not text.

ETA: I remember reading that some thirty-percent of the world’s data storage is already devoted to health records… and that was maybe six years ago, before Meaningful Use came into effect.

~Max

[slash2k]

@SamuelA

EXACTLY. It already is this, so it doesn’t make any difference if medical records are also out there. You are already being discriminated against for tons of illegal reasons.

You have it exactly backwards. Putting lots more records “out there” gives many more opportunities for illegal discrimination, which is a pretty big difference.

[Max_S]

@SamuelA

And, in turn, licensed cloud providers must make their indexes and records accessible to all other licensed cloud providers.

A more reasonable first step might be to lay down a standard format for electronic health records. You may not realize it but the electronic records in my office are organized differently than the records in most other offices. Behind the scenes our EHR system uses some sort of proprietary XML-based system. Sure, it can export basic information according to H.L.7 standards - but not everything, and not even everything clinically relevant.

~Max

[jz78817]

@SamuelA

Again, I keep saying this over and over again. There is nothing I can say or do or find myself diagnosed with that there won’t be thousands or millions of other people with the same thing. I am not famous. Nobody will give a shit what disease I personally end up with, or what sexual proclivities I tell a psychiatrist.

that’s all well and good for you.

I am saying this is true for nearly all of humanity. Only a teensy, tiny fraction of us are famous enough to have a genuine, legitimate reason to need medical privacy. The rest of us will not benefit in any way from it.

nobody appointed you to decide what is good or true for nearly all of humanity. You seem to hold tech solutions like “the cloud” as the answer to everything. And you’re going to find ways to force your beloved tech into everything whether or not it’s appropriate. People have legitimate reasons to not want their medical histories available to everyone. Your need for “tech everywhere” doesn’t trump that.

[Max_S]

@SamuelA

Again, I keep saying this over and over again. There is nothing I can say or do or find myself diagnosed with that there won’t be thousands or millions of other people with the same thing. I am not famous. Nobody will give a shit what disease I personally end up with, or what sexual proclivities I tell a psychiatrist.

I am saying this is true for nearly all of humanity. Only a teensy, tiny fraction of us are famous enough to have a genuine, legitimate reason to need medical privacy. The rest of us will not benefit in any way from it.

I have underlined what I believe is your central argument: most people should not value privacy in healthcare. It appears that you support this argument by generalizing your own opinion. I will now offer four counterarguments.

First is the argument that privacy is a human right or morally good in and of itself. This is an axiom. There are tentative arguments about dignity and liberty but I think such a debate ought to be reserved until you explicitly reject the premise that privacy is a right. My understanding is that the legal community has taken the view that privacy is a right.

Second, if you do agree that privacy is a right, but argue that the right to privacy crumbles in the face of the public good provided by aggregate health studies, realize that some people outright reject that form of utilitarianism. To some, “the needs of the one outweigh the needs of the many” (Star Trek III: The Search for Spock, 1984). That debate is a topic in and of itself. Even among utilitarians, the burden of proof is on you who would stray from the status quo. You must show how potential benefits from a centralized health registry outweigh the assured violations of everybody’s right to privacy.

Third is the concern, related by others in this thread, that health information may be used against you. When health information is disclosed to your family and friends, it can result in stigma or embarrassment. When health information is exposed to employers and insurers, it can result in discrimination. As you noted, this potential discrimination is not necessarily something the government can crack down on even if it wanted to. For the very famous or paranoid, health information can be exploited by bad actors to cause direct, physical harm to the person (eg: assassins injecting with venom a person who has a history of anaphylaxis to vespids).

Fourth, there is the concern that many people who value privacy for the aforementioned reasons will stop seeing doctors or withhold important information from doctors if their privacy is not guaranteed. In the industry this guarantee is known as confidentiality. We saw this most strikingly in the field of mental health, especially during debates over mandatory reporting. You have admitted that mental health should still be protected, but the point is that the same rationale extends to all forms of health information - unless the patient is at risk of harm or of harming others. Specifically, if people are not given assurances as to confidentiality, they will stop seeing or cooperating with doctors and your aggregate data will still be biased, but now people aren’t being properly treated.

~Max