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Comment by goldcd | Hacker News Reader

In (the UK at least) your medical notes follow you as you sign on with a new GP (General Practitioner - first point of medical contact for anything non-urgent). Now knew this theoretically happened, but was quite bemused to see it happen in practice. I rescued a rat from the silken-jaws of my pseudo-homicidal cat, and the ungrateful rodent bit through half of my finger - I thought it would be sensible to have a checkup/shot. I've only got a hazy recollection of what shots I've had when, so my notes were consulted. Seemingly, according to my paper notes produced from the cabinet, 40 years ago "I was an adorable wee thing" (aged 2).

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I'm not entirely convinced the UK/NHS should ever be used as a good example for handling medical notes, at least by today's standards.

As a Brit who left the UK a while ago, I recently had cause to request my "medical records" from my former GP. Of course such data can presumably be requested via the UK's Data Protection Act, but the lack of any kind of standard process or checks really shocked me, given the care they are treated with in places such as the US via specific legislation such as HIPPA and so forth.

My GP posted my entire history after one phone call to their receptionist via Skype, did no checks what so ever on my identity beyond confirming my name and DoB to look me up, I was left close to speechless following the call. I can't profess to be an expert on the topic of rights to medical data in the UK, but the above was true of my own experience and others I know, I've heard similar stories from a handful of GP friends and family. There is literally nothing stopping someone pulling your name and DoB from a Facebook account or similar and doing the same in many cases.

The number of GPs without electronic record keeping of any kind in the UK frankly amazes me as well, supposedly the NHS will be paperless by 2020...

Totally unsubstantive, but an interesting anecdotal psychological phenomenon occurred while reading your comment. Before I got to this line:

> As a Brit

I read your comment with no accent, but after I read that line my brain switched your "voice" to a British accented one :-)

Don’t worry, US medical practices will give you a big show about doing anything in the name of HIPPA.

Rest assured, it is a show, and most of your information is fed in real time to a half dozen different entities whom you have never heard of. The people who sell prescription data provide it to the pharma company before your insurer even gets the claim.

Is what they're doing illegal or is that behavior not prohibited by HIPPA?

It is legal. HIPPA protects you from chatty employees and gross incompetence.

"Protects" you. It just gives some penalties to the companies for gross negligence, kind of like the GDPR is trying to do for all of personal data in the EU.

Is the data anonymized when they send it? And is there anything I can read about this practice further? Not trying to challenge you, just curious.

Given the spotty, lost, inconsistent, difficult to access, difficult to share state of medical records in the US, getting a full set, easy peasy, seems like a wonderful problem to have.

That's amazing.

I guess, in the US, we only started tracking patients recently. I had to call and have my old records faxed from my old GP in Texas to one in New Jersey, and then again from that GP to my NEWER one in New York. Earliest record was from when I was 7, since neither my mother or I remember who my pediatrician was before then.

I disagree on this stance. If you were diagnosed with depression when 13 but no longer depressed its nobody not the doctor, the nurse, the IT staff jobs to know this unless you choose.

You have everything from Psychology/Psychiatry notes to overdose records that many health staff can pull up from almost any computer.

EDIT: Remember many jobs disqualify you from the job if you have any past psychiatric treatment. Even if you are in your 40s Psych drugs at 13 are a disqualifier. "Paying cash" is what some doctors have resorted to. http://www.idealmedicalcare.org/75-med-students-antidepressa...

I could be wrong, that's why I said I guess. It was just based on my personal experience in switching doctors a couple times when I moved away from my home town.

It absolutely 100% is at least the doctor’s job to know this. If you come back with depression again, the doctor needs to know what medications were used last time to treat you this time. They need to know if you had allergic reactions, no response, or other details regarding your medication history. The doctor may also be able to use a history of depression as a supporting factor for a new diagnosis. Your history of depression may be the thing that tips your doctor toward getting an MRI of the brain to rule out a brain tumor, for example.

I dissagree. If I have some sensitive medical history and I go in for stitches or some other minor thing with an random doctor I might not want to share all my medical history. It’s my history and I should have the right to control who sees it.

I'd rather opt out of a few sensitive things than not have an ER doctor in another state not have easy access to critical information about me.

You are not a medical professional and the list of medical procedures or remedies that interact poorly with each other is long and full of unexpected things.

Your profession should not dictate your rights to your data.

No one is stopping you from accessing your data. The question is to whether you should be able to stop your doctor (or your emergency doctor) from accessing your medical data. Sounds like a bad idea.

It might well be, but shouldn't it be up to you to decide that? It's your private data.

Agreed. It's your private data and it's also your body! If you end up getting worse treatment due to not sharing data, it's on you. As an adult and the owner of my body, that's my right to decide for myself.

Quite surprised to see such strong opinions on this issue - I can obviously sympathise with a desire to privacy but personally hold faith in doctor confidentiality.

More pressingly - how can a doctor provide the best care in the absence of records?

Imagine trying to ship a bugfix for a complex system where you don't have the source code and the business owner is refusing to give you the documentation but will sue you and ruin your career if you make a mistake.

I'd probably refuse to see the patient given how much pressure doctors are under to not make a mistake.

What happens if you got a nasty gash and wanted the wound treated and the doctor wanted to issue antibiotics as a precaution but you had a penicillin allergy (which you either forgot to disclose or simply didn't know about but were tested for at some stage in your childhood)

Whether you should or shouldn't share that information with your doctor is a different question, and is the one where trust etc is relevant. The point here is that the choice to share or not share should be the patient's, regardless. If doctors want to turn down patients that wouldn't share something, that's up to them, of course.

> Quite surprised to see such strong opinions on this issue

you shouldn't be. to a certain group of people, it is particularly loathsome to be prohibited from doing things that can only hurt the person doing them. this is basically how we treat children.

a patient should be allowed to limit access to their medical records for pretty much any reason. an individual doctor should also be allowed to refuse to treat a patient who is unwilling to disclose part or all of their medical records; they may have valid liability concerns. but revealing your records should not be a precondition to accessing the entire field of medicine. what part of this do you have a problem with? you still get to deal with your doctors however you want.

The real question that matters most in the ER is “What is your date of birth?”

just because something is a bad idea doesn't mean you shouldn't be allowed to do it.

While this is true, knowledge of other treatments can in a number of cases actually harm the patient as well through malpractice.

See: https://journals.tdl.org/jrwg/index.php/jrwg/article/view/97

https://www.dailydot.com/irl/trans-broken-arm-syndrome-healt...

https://www.pinknews.co.uk/2015/07/09/feature-the-dangers-of...

https://www.reuters.com/article/us-britain-lgbt-health/briti...

Sure this is a minority, but it still harms people.

I agree with this completely; not being able to understand a patient's medical history often makes it much harder to treat them effectively. Especially in an emergency setting.

That said concerns about the sensitivity of information are absolutely valid and should be at the forefront of EMR systems.

In my experience (UK) access to records is reasonably well restricted to relevant staff. Access is audited in efforts to identify unauthorised access and this is taken extremely seriously; for example opening records for patients not under your direct care with no valid reason.

Further, for particularly sensitive information such as some psychiatric histories, or medical photography of sensitive areas, this is kept behind a secure area within the EMR systems, not generally accessible. Opening it requires signing a declaration that you have either discussed it with the patient and gained consent, or that you do not have consent and you are opening it in the patients best interests in an emergent situation as they are unable to consent (e.g. history of depression with paracetamol (acetaminophen) overdose brought in unconscious by ambulance.

I have friends disqualified from legitimate jobs after taking Psych drugs from decades ago. Somehow I think there needs to be a line. Doctors have known the way around the system for quite a while.[0]

EDIT: left original link tried to clarify.

[0]: "I drive 300 miles to seek care and always pay in cash." http://www.idealmedicalcare.org/75-med-students-antidepressa...

This is a serious issue: doctors have a huge disincentive to receive psychiatric care in the US.

It is also completely off-topic.

Anyone who would ever consent to psychiatric care or treatment of any kind (especially pharma) should have their head examined! ;-) Seriously, the risks of seeking such care far outweigh the potential benefits in virtually every circumstance. NEVER forget that your EMR is forever - it will outlive you, and could well become a curse upon all your progeny.

As an MD, thank you for this comment.

Beware, people with mental illness also suffer from ordinary ailments.

Obviously. I'm not a psychiatrist :-)

A huge problem for people with a mental health dx in their history is doctors reflexivity dismiss complaints as a 'mental issue'.

I'm ok with my doctor knowing my complete history, but I do not want my insurance company or any third party to have access to these records.

Not necessarily. Some places segregate psychiatry records from general medical records, and won't send them unless specifically requested.

This is a very important point. Individuals should be able to censor aspects of their own medical records. It's not just mental illness. Getting regularly tested for STDs/AIDS or having evidence that could be interpreted as a pre-existing condition are other aspects of a person's medical history that can cause problems with potential employers or insurers.

This goes back to the central thesis of the article: that interference from non-physicians (i.e. insurers, billers) are destroying the usefulness of notes.

Physicians are bound by both a professional duty and oath as well as legal liability to keep your medical information in the strictest of confidence. But it is nearly impossible to know in advance when a particular piece of medical information will become important for the treatment of a patient. Hiding it because of concerns about insurance or employment is not a solution--it's an indication that insurance and employment have undue influence on or access to a professional record.

I think this comment really hits it on the head.

Your medical record is meant to be a confidential record read only by those who are sworn to care for and protect you, and by nobody else for no other purpose.

As a student doctor it's alarming to think that people do not feel they can trust their doctor with their medical history. I wonder if this is particularly a problem with the US healthcare system.

You and all your colleagues should be aware of the Medical Information Bureau and IMS health.

Despite all of the kabuki theater about HIPAA and black covers on clipboards and whatnot, every single medical fact that is even considered for payment by an insurance company gets hoovered up into various industry databases and shared with any insurer who bothers to ask.

I trust a few (definitely not most) doctors with medical information about me. I trust no EMRs, ever. I've worked with too many of them and seen how they're abused. Security and privacy in healthcare are a joke, and I say that as someone who once did massive-scale managed care systems for Fortune 50 companies. Anything I would deem personal and private I want to exist only in a paper record.

> This goes back to the central thesis of the article: that interference from non-physicians (i.e. insurers, billers) are destroying the usefulness of notes.

I think there's a big difference between third parties interfering with those notes for some profit motive, and the person who those notes are about interfering for privacy reasons, no matter how misguided.

Here in the UK, I believe that sexual health clinics keep a separate clinic-local file on you, which is never linked to your main file unless you consent. Any correspondence or samples that go out of the clinic are labelled only with your clinic ID, not your name.

Or we could just make medical records private.

You were downvoted for this, and I agree that it’s a controversial stance, but there is a genuine point to be made here.

It’s not uncommon for teenagers to be misdiagnosed with mental illness or ADHD and either of those are disqualifiers for FAA medical certification, military pilot careers, and likely many other military, law enforcement, and intelligence careers. IIRC, a prolonged history of ADHD treatment is enough to disqualify military entrance for any MOS without waiver. Waivering prior ADHD diagnosis requires a costly and difficult process to undiagnose the patient and prove that he or she no longer has the condition and was incorrectly diagnosed in the first place, at least if you are trying to get FAA certified for a Class 1.

> It’s not uncommon for teenagers to be misdiagnosed with mental illness or ADHD and either of those are disqualifiers for FAA medical certification, military pilot careers, and likely many other military, law enforcement, and intelligence careers. IIRC, a prolonged history of ADHD treatment is enough to disqualify military entrance for any MOS without waiver. Waivering prior ADHD diagnosis requires a costly and difficult process to undiagnose the patient and prove that he or she no longer has the condition and was incorrectly diagnosed in the first place, at least if you are trying to get FAA certified for a Class 1.

How do you feel about the (I presume underlying notion, at least when it comes to programming jobs) that a "bad" hire is costly and we'd rather let ten potentially great candidates go rather than accidentally hire one very bad candidate?

It's rooted in an absurd confidence in the interview process actually successfully evaluating candidates.

In practice, I bet places that emphasize that attitude tend to hire people that the interviewers like socially.

The relative risk of driving while having ADD/ADHD (accidents/km with / accidents/km without) is around 1.54 [1]. This isn't horrible, of course, but it's still bad.

Non-disqualifying visual impairments have a relative risk down around 1.2, implying a surprisingly low cutoff for a visual impairment being disqualifying. "Severe behavioral problems due to ageing (dementia)" have a RR 1.45. A category covering epilepsy, narcolepsy, and other conditions causing sudden interruptions/disturbances in consciousness is at 1.84, and those conditions require medical sign-off in every country I checked. Diagnosed alcoholism amortizes to around 2, and that'll get you a breathalyzer or suspended license right quick.

The cutoff for being ticketed is is observed to lie around a relative risk of 4, which is where cell phones come in. The cutoff for being arrested on the spot, being legally drunk, is a relative risk well above 10 and probably up around 40.

Interestingly, almost nothing is as bad as being a teenage male, which carries a relative risk around 7. Teenage females are around 5.5.

That all said... while we can certainly complain about rampant misdiagnosis - I wish I had a dollar for every time someone told me that I'm just addicted to stimulants - my opinion is that this particular rationale for disqualification is absolutely justified. There's a reason I don't drive.

[1] https://www.toi.no/getfile.php/Publikasjoner/T%C3%98I%20rapp...

Hmm, I haven't had a chance to thoroughly check out the article you linked, but I am surprised it's coming from Norway of all places. ADHD isn't as widely treated in Norway as the USA; additionally, Norway's population is only about 5.5 million people, so I am a bit surprised they have conducted enough research on ADHD and driving to present strong research on this. That said, I'm not saying you're wrong or the research is invalid. I'm just surprised.

"That all said... while we can certainly complain about rampant misdiagnosis - I wish I had a dollar for every time someone told me that I'm just addicted to stimulants - my opinion is that this particular rationale for disqualification is absolutely justified."

So, I'm also an ADHD patient, medicated. I've gone back and forth between believing in the diagnosis and thinking maybe I'm just dependent on the medication that I've taken for so many years. It's hard to say now, and of course quitting stimulants requires a LOT of time off work and learning to execute tasks without pharmaceutical aid. So, if you were to take a patient who has been on amphetamine for 10 years and abruptly cut him/her off, the patient would likely go through a period of fatigue, low-interest in activities or work, and struggling getting anything done. I've heard this can take as long as 6 months or a year for certain people. I don't believe you can diagnose ADD/ADHD or any comorbid mental illness in the presence of drug withdrawal. Think of it as a "brain re-training" period. As you can imagine, not many people have the willpower or resources ($) to take time off work and truly "reset" their brains, so they stay on the meds and hope that it works out..

Are you a doctor? (I would guess not)

I am surrounded by doctor family members and friends (and nearly trained as a doctor) - diagnosis comes from incredibly vague datapoints and so context (and additional data points) are so valuable.

Patients are also often unreliable narrators. Having everything on record (but properly protected) is tantamount to being able to give the best care you can.

Yeah in theory they do but in practice if you move around a lot (like pretty much everyone does these days) they get lost.

It's just surgeries posting paper notes to other surgeries. Very archaic and unreliable. They did try to digitise everything several years ago but somehow managed to waste £13bn and produced nothing. Completely incompetent.

Record keeping is one area of the NHS that is a total embarrassment.

> managed to waste £13bn and produced nothing.

Not true. A massive amount was wasted, but useful services were delivered as part of that £13bn, such as N3, PACS and the Spine.

That's the theory, although between the "NHS Spine", Serco, and a move between England and Scotland's separate systems a big chunk of mine have gone missing.

Funny-Looking-Kid (FLK) and other such diagnostic gems are present in notes of that vintage.

FLK isn't a diagnosis, but it is a useful clinical impression that might lead to one, even now.

It probably shouldn’t be written like that in notes though.

Frequently, those are code words - for instance, at one hospital system I worked with, "quiet lady" might be used to describe a really slow, stupid woman, since they couldn't put "evidence of low intelligence, mental retardation, or mental instability" in the medical record for fear of legal repercussions...

The US is trying to do this as well. The very famous HIPAA is actually about that, and not as much about the privacy provisions that made it famous.

Implementation of this goal though ..... not as successful. Mostly because those who make the electronic record systems don't understand the field well. See: https://news.ycombinator.com/item?id=18781264

Go read the requirements - HIPAA is really 90+% about disclosure and reporting of events that compromised private patient information. There is virtually nothing in HIPAA that is aimed at preventing privacy breaches in the first place. Once a breach is disclosed, the penalties in HIPAA pretty much vanish.

I had a surgery a little over a year ago (in Toronto), and before that surgery they were reviewing the just the details from the stay. It was full of stuff that literally never happened, and incorrectly recorded numbers. I was pretty amazed at quite how incorrect it was.

I was told your permanent record wasn't a real thing!!

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