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Comment by jcampbell1 | Hacker News Reader

I have never understood the reason medical records are extremely private. I'd be much more worried about my email/search history/SMS/etc. being published. My medical history I don't really care much about.

I understand that we don't want companies using our medical history to make decisions, but is HIPAA just a hangover of HIV/AIDS?

My instinct is that HIPAA has cost many lives by locking up data that could be used to help doctors be better doctors. If my kids were allergic to bee stings, I wish this information would show up as the first result of a Google search.

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TFA pointed to some reasons:

"Random scenario: a burglary gang gains access to the database and can thereby identify patients aged over 80 living alone in up-market neighbourhoods who have recently been admitted to hospital with conditions suggesting that they will be vulnerable but not supported by full-time carers. A religious organization targets men of a certain age who are HIV positive. Or women below a certain age who are single and pregnant. Or an insurance company notes that a patient made a mistake in their declaration of a pre-existing condition, and thereby invalidates their claim. An identity thief uses the postcode and date of birth, in conjunction with a copy of the public electoral register, to pick victims. The possibilities are endless"

I can add a few more. A wife beater looks up his wife's records to see if she has gone into hospital. A rape victim doesn't want her work colleagues to idly google her medical records and find out. A hopeful job candidate doesn't want her interviewer to know about her problems with self-harm 15 years ago.

Perhaps none of those situations are relevant to you. But they apply to some people and that's why we keep all records private.

I agree with those hypothetical possibilities. The other type of failure is also possible.

My dad recently had a detached retina. He spent 5 hours getting his own medical records. In the medical records, it said he was given a dose of Cipro. "Which is funny because I am deathly allergic to Cipro, and since I am alive I certainly wasn't given Cipro."

Had he not spent 5 hours getting medical records and writing letters, some future doctor could easily kill him based on that erroneous medical record. Other than retired people, who has the time to penetrate the HIPAA mess. It can be lifesaving.

I think it is easier to make private information public, than it is to make public information private.

We can mitigate that sort of failure with things like medical bracelets (http://www.mediband.co.uk/). Paramedics check for medical bracelet, necklace and wallet information cards. One of the first words any medical staff will ask is about allergies.

I recognize that that is hardly ideal and indeed some lives are undoubtedly lost because of it. But I think going public with medical records is too far.

Fully public is clearly too far. I just wish I could access my medical records like I access my own email.

As far as I understand, HIPAA regulations make this illegal to even think about. That is what I mean by "extreme".

> I just wish I could access my medical records like I access my own email.

Why do you think you can't? They can't actually be sent to you over unsecured email, but they certainly can be provided to you securely, and the access methods can be very similar to what you would do with email. I don't think anyone offers a data dump rather than a UI into a hosted product, but I don't see any legal reason under HIPAA for that.

> I understand that we don't want companies using our medical history to make decisions, but is HIPAA just a hangover of HIV/AIDS?

If by "HIPAA" you mean the privacy/security positions, no. First of all, HIV/AIDS (or even STDs more generally) is hardly the only medical concern people want kept private. The privacy and security provisions were designed to negate foreseen resistance to the administrative simplification provisions (incentives to adopt electronic transactions, national standards for form and content of electronic transactions, etc.) and thereby improve information sharing. (And just about every subsequent enhancement of the privacy and security provisions in the law has been tied to a new set of administrative simplification provision that extends new incentives to electronic transactions and records, extends the scope of mandatory standards for electronic transactions, etc.)

> My instinct is that HIPAA has cost many lives by locking up data that could be used to help doctors be better doctors. If my kids were allergic to bee stings, I wish this information would show up as the first result of a Google search.

One of the big motivations for HIPAA and its subsequent enhancements in terms of standardized health records and transactions is, to the extent this is relevant to doctors being doctors, making this the case.

Except not with "Google" or other systems publicly accessible for non-medical purposes that lack detailed accountability to you for who has used it and for what purpose.

It is interesting that HIPAA is the opposite of what I thought it was about. It is motivated by sharing with privacy protections, rather than being motivated by privacy.

I can imagine that if I ever got a leukemia, I wish I could see 1000s of patient records of people with a similar disease, rather than having to rely on a doctor who spills tons of bullshit based on anecdotal experience.

Medical information can be the most private information about people. There are plenty of situations with obvious stigmas - STDs, abortion, mental health as well as a near infinite list of things which could cause embarrassment or that people would want to keep private, from acne to miscarriage.

The last thing we want is for millions of people to stop going to the doctor because they're scared their classmates, coworkers and neighbors are going to know about their [rash, lump, depression, diarrhea, anxiety, psoriasis, pregnancy, etc].

You make a good point about people not seeking medical attention due to privacy concerns. I certainly don't think medical records should be public. It is the extreme privacy that I take issue with.

I mean, why the hell can't my doctor email me my blood work even if I ask?

How do we know we have struck the right balance?

Email is not private and not secure. I'm not sure if the law makes exceptions for encrypted emails, but that's a moot point considering most doctors can barely use a computer.

But it's my privacy and security that's at issue. I don't think it's obvious why I shouldn't be able to waive those concerns.

Most people can not understand the impact of such a decision and must therefore be protected from doing that.

That's one argument; I don't think it's an outstanding one. A sort of "traffic analysis" argument seems somewhat reasonable, too - if the only things kept secret are embarrassing or compromising, then learning of the existence of a secret communication tells you there's something embarrassing or compromising going on.

Protecting people from themselves has plenty of precedents - food industry, handrails...

Regarding your second point: Many things that are not embarrassing or compromising (in a negative sense) are rightfully kept secret.

Anyways, great topic, not so great subthread, I'm out.

"Many things that are not embarrassing or compromising (in a negative sense) are rightfully kept secret."

I don't intend any negative sense, just things that you have a particular reason to keep hidden. Allowing additional inference around that by being selective about channels seems like poor privacy practice.

True. The doctor can still be held liable for damages, so the law is actually there to protect both patient and doctor in this case.

> But it's my privacy and security that's at issue. I don't think it's obvious why I shouldn't be able to waive those concerns.

You could, in theory, consent to a disclosure to of your PHI in insecure form to the doctor's email provider (or maybe to the whole chain between the doctor and you, but i don't think that would be necessary since once its been disclosed under your consent to someone not covered by HIPAA they can do anything they want with the data, including delivering it to you), but doctors would probably to use a method that doesn't require that overhead and not also manage the kind of consent tracking that would be necessary to use unsecure email (and would rather not deal with the PR fallout that would happen when someone who didn't really understand the implications got bit by it.)

The fact that you could, in theory, under the law consent to certain insecure disclosures to third parties doesn't mean that doctors are mandated to maintain the infrastructure to deal with every conceivable way you might want to do that. They are required to provide information to you under certain circumstances, and not to provide it to others except as allowed under the law.

Fair enough.

Currently the privacy pendulum is all the way in the free-for-all territory.

- Consider that it takes only one breach and all other measures you've ever taken to protect data is wasted.

- Data can be used in the future in unforseen ways, you don't know by whom and what for.

- Most people don't understand how databases work and think in terms of individual data ("who would care about X") and are therefore careless with their data.

It's the term "extreme privacy" that does not make sense in a time where you can't really have "basic privacy" any more.

Got any more insight into that topic? Or maybe do you underestimate the consequences of the ongoing collection and aggregation of data?

Your medical records are a proxy to your current health. Thanks to big data, they are a proxy to your future health and that of your relatives too (and by extension, theirs to yours). Health factors can impact every relationship you have with anything or anyone, as well as your ability to perform any activity, and many of them are not reversible in the way that debts can be repaid or ideology can change. Therefore, if you believe in any need for privacy at all, then health is the most important privacy of all.

Because doctor-patient trust is vital. If people are afraid to tell their health care providers anything important, then both individual health care outcomes and public health will suffer.

That you don't care if people know your medical history is great, but you shouldn't project that to other people.

Examples of things where people have entirely legitimate concerns about how others might react: sexually transmitted diseases, addictions, chronic diseases, contagious diseases, terminal conditions, mental health issues, pregnancy, failed pregnancy, abortion, and anything predictive of future health issues. And examples of people that they might not want finding things out: parents, children, pastors, church members, neighbors, insurance companies, current employers, tabloid journalists, future employers.

You lack imagination. There are many people whose medical records contain much more sensitive information than "allergic to bee stings".

As an example US immigration are now sometimes turning away tourists with mental health problems. So in the absence of privacy if you have such problems you can either turn down treatment and suffer or risk being unable to visit or even transit via the US. http://www.telegraph.co.uk/news/worldnews/northamerica/canad...

I remember a similar issue when the italian government decided that it doctors should report treatment of illegal aliens. This just meant that a lot of illegal immigrants didn't want to get cured and it posed a severe risk for public health regarding contagious diseases.

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