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How Did Our Medical Notes Become So Useless? (jwatch.org)
252 points by mrestko 3 months ago | hide | past | web | favorite | 200 comments

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).

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...

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 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.

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.

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.

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 :-)

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...

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 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.

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.

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.

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




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

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.


Please don't post in the flamewar style to Hacker News. We're trying for something better than that here.


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.

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.

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.

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

As an MD, thank you for this comment.

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

Obviously. I'm not a psychiatrist :-)

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.

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..

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.

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.

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.

> 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.

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

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.

Or we could just make medical records private.

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.

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...

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

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!!

Medical notes are largely fiction IME. You should request all your medical records from any doctor you have seen and start demanding they correct them. You will be shocked at the lies they tell about you.

You will be even more shocked down the road when you find out how these lies can hurt you.

"how these lies can hurt you"

True story, I had a major illness in my late 20s. And apparently I have a high tolerance for pain, so the nurses and doctors repeatedly underestimated how much pain I was in. I can be in incredible pain and still hold it together and answer questions in a calm and rational manner. This made one doctor suspicious that I was faking the whole thing. So then I tried to adjust my behavior. I started deliberately giving more outward signs of the pain I was in. And then the another doctor accused me of exaggerating or being a hypochondriac.

I was not able to find a level of external performance that kept all of my doctors happy. If I was too restrained, then they had trouble believing I was really feeling the pain that I described with my words. But if I tried to act the pain I felt, then I was accused of being a hypochondriac.

I should add that most of my doctors were great. In my whole life, I've only had 2 negative experiences with a doctor, the two that I just mentioned.

"I have a high tolerance for pain"

I know you said "apparently", but how can you know this for a fact?

How can anyone's pain tolerance be objectively measured? I've always wondered about this...

Pain causes not just symptoms, but also physical signs. Increased blood pressure, for one. These are the physiological consequences of the way pain signalling happens in the body. People can even die from these physiological effects.

The physiological signs of pain occur mostly as a consequence of the way we consciously experience and process pain. (This is why "general anesthetic" works: central processing of pain is required before sensory input is actually registered as painful, and so, without the brain there to decide that a thing is painful, the physiological consequences don't happen. Pain that would give you a heart attack if you were awake doesn't cause the slightest physiological problem when you're unconscious from general anesthesia.)

If you are receiving a lot of "painful-stimulus describing" sensory input, and you're consciously experiencing those stimuli as painful qualia—but your body shows relatively little physiological response—then you have a high tolerance for pain.

This can be measured by using a standardized painful stimulus (e.g. a sub-cutaneous injection of a standardized dose of some insect's venom) together with an fMRI (or just self-reporting) to measure the intensity of the painful qualia, and various physiological monitors (EKG, etc.) to measure physiological response to the pain.

I believe this has been done before specifically in the case of certain sects of monks who like to demonstrate the depth of their meditative ability by tolerating large amounts of pain. They did the experiment to try to figure out whether the monks are tolerating an experienced pain, or merely are somehow not experiencing the painful stimulus as pain-qualia.

Contrary to the myth, general anaesthesia does not in fact fully defeat physiological responses to painful stimulus.

I've watched first hand as the anesthetist has said "whatch the monitor as the surgeon does this bit" and seen the response.

Not at the levels we like to use for surgery, certainly. But my understanding is that a “medically-induced coma” (the potentially-irreversible palliative-care kind) does suppress all pain signalling. Likewise, people in a vegetative state have no physiological response to pain. If you completely suppress central functioning, then you completely suppress pain response.

(There might still be a local release of pro-inflammatory cell-danger-response purines from the wound site that do things when they hit various organs/tissues on their way through the circulation, but I believe we don’t tend to call those “pain signals”, for the same reason we don’t call them that in plants or fungi.)

Some anesthesiologists believe that, but there's really no solid evidence for it. The reality is that no one really knows how or why anesthetics work, we just know what generally does work. I was told this by an honest doc, who also told me this scary fact: Because it's best to minimize the drugs that put you under (especially gaseous), and b/c we're getting better at walking that line, it's increasingly common to have patients wake up and freak out at the sight of their chest spread open. That's why the anesthesiologist keeps a couple of loaded syringes on the cart ready for emergency use: one is an instant paralyzing agent, the other a powerful memory blocker.

I found omissions to be particularly interesting too.

For example, I once declined to take a shot after the doctor explicitly told me that it would most likely not yield any benefit, given the response I had from other treatments.

The medical record simply shows that I declined the shot, but not that this was upon strong recommendation from the doctor.

This became an issue later when the provider went back to the records and stated "you were offered this shot and declined". It is technically true of course, but context would tell a slightly different story, and would definitely shift more responsibility towards the doctor.

The doctor was probably right to make this recommendation, but the fact that it is not captured in the records makes me uncomfortable.

Half the goal of note taking is not writing down anything that will implicate you in a future legal battle.

This statement is very accurate.

The article has an example of the opposite, but equally important oddness of liability. If you don't mark down "XYZ thing is normal" then someone will come back to complain that you didn't find a problem with XYZ when examining them 27 years ago.

A while back I had a doctor where you could access everything via the online portal. I don't think some of the employees there realized that as there was some truly shocking stuff in there. One thing I learned was that anything I said which could possibly be misconstrued in a negative light was noted in my record as if the negative connotation was accurate.

I think you're being too kind. The person taking notes was (or should have been) trained to listen for and accurately record admissions against interest. If it ever wound up in court stuff like this is presumed to be highly reliable because reasonable people are disinclined to admit to negative things.

This sort of thing highlights the need for broad and bulletproof physician-patient privilege.

When I carefully read my records, I saw a bunch of random errors. I asked my PCP and surgeon how that happened; they said “probably transcription errors”

I don’t have a lot of faith in the quality of the records

And this is before you realise that your identity may have been incorrectly matched against someone else leading to you having somebody else’s treatment on your record.

It’s not always the healthcare provider at fault here (but must usually be). I’ve been peripherally involved in 2 cases where someone actively pretended to be someone else (one due to a sketchy immigration status and the other was a mental health situation).

Both were a complete nightmare to sort out.

In the US you're legally entitled to your medical records too but every time I've done it the response is always defensive, ie "why do you need them", "send me the doctors information and I'll fax it to them myself".

every time I've done it the response is always defensive, ie "why do you need them"

I was asked this once after requesting mine. I flatly said "I don't", and waited. The person on the other end of the line was clearly thrown off by this, probably expecting something they could dish out a canned response to, hoping I'd give up. It was obvious from their voice they were scrambling for what to say to that.

A bit of rigmarole later, I had my medical records.

I encourage patients to read or listen to me dictate my note about them during our exam. Often they catch something that I had misinterpreted.

That's a great idea! Simple and sounds very effective.

Side question, would the "right to be forgotten" also entitle you to call your doctor and demand that all your medical records be destroyed?

Docs need to keep a history for multiple reasons, from insurance to malpractice lawsuits, so no.

My understanding is that, in the US, your medical records are the property of the healthcare provider, absent some contractual language otherwise. The new thing was the federal law that required them to give you a copy of everything at cost. Before that, the only sure way to get a copy of your medical records was to sue the provider and perform document discovery.

Why would they be so hesitant? Surely it’s not that extra work for an office admin to pull something up and hit “print”.

Some doctors have been concerned that patients lack the education needed to interpret their own charts. So when patients don't understand something they call back and ask a lot of questions, which doctors see as a waste of time. (I don't agree with this perspective, just giving some context.)

In the US that's fine, because the doctor can bill for the follow-up consultation.

Answering questions over the phone is usually not billable.

Most patient management systems don't have a convenient "print" button to print out the entire file.

Individual documents/entries, yes. Everything, no.

> In the US you're legally entitled to your medical records too but every time I've done it the response is always defensive, ie "why do you need them"

Whenever I've been asked, I just say "I want them for my files," and I've had no problems.

Sometimes questions like that could actually be an attempt to be helpful. For instance to send along only the needed records rather than a fat file full of extraneous info or save the patient the trouble of being a middleman between two doctors.

Sometimes questions like that could actually be an attempt to be helpful.

This is my thinking, annoying as it can be-I understand and can appreciate this position. It's possibly a matter of how that help is intended to be delivered.

"Why do you need the files?"


"Is there something about your last visit you have questions about/do you have a follow up question for your doctor?"


I mention this because when I was on hard times financially and fell behind on a few bills I found it quite invasive and annoying when I called, on my own initiative to make a payment only to be asked "Why were you late on this payment?" in a rather abrupt manner. My response has always been "Is this question required for you to process the payment?" to which "No but we have payment options and plans to help individuals who may have fallen on hard times".

Okay, that's fair. I'd be more receptive if that olive branch was offered more delicately than "Why were you late?" which is frankly none of the debtor's damn business.

I agree that it could be handled more delicately, and that doing so would probably be more fruitful (and just more pleasant). I'm not sure it's none of the creditor's business why a payment was late though. It's certainly in their interest that payments be made on time, and to have the ability to estimate the likelihood that future payments will be late. Given an obligation to pay an amount by a given date, it doesn't seem completely unreasonable for an explanation to be requested if the amount isn't paid.

this is probably just because there is a pop-up dialog box the secretary sees when she puts in the request, and they are obligated to ask. there is no answer that will result in your request being declined, including "I'd rather not say".

This is interesting, and I didn't know it! Does it include everything (doctor's notes, etc.), or just whatever your doctor/organization wants to include in your "official" medical record?

I'd like to do this myself, but I want to understand what I'm actually entitled to so I can be prepared if they push back.

I recall reading perhaps 30 years ago that in China people (from birth) possessed their original medical records and brought them to the doctor's office or hospital. I have no idea if this was/is true. I remember thinking how wonderful this would be, as opposed to the U.S. system (I'm a retired neurosurgical anesthesiologist with 38 years of experience — UCLA/USC/UVA). As a rule, I administered anesthesia to people whose records were often lacking very important information from outside physicians/other hospitals that was simply unobtainable in the time frame available to get it: i.e., patients were admitted the evening before craniotomy/brain tumor resection etc. scheduled for the next day, and their previous records — other than those from the hospital I/they were in — might as well have not existed.

Faxing to you carries a bunch of bureaucratic hurdles to avoid HIPPA violations. Facing to another physician doesn’t, and the other physician will be quite good at narrowing down exactly what records he wants.

It’s just way less work to send them directly. And since that’s what most patients are asking for...

At Kaiser, you just have to walk into any member services office and request. It doesn't happen right then, but I believe in a few days you get a thumb drive with all of your records on them.

However, the law allows the doctors to redact certain portions in your copy that they feel could be harmful to you.

1-2 years after moving to Finland I had a brain-scan done, and the doctor involved told me I could get a copy of the data if I was interested.

In the past I worked at a medical company, so I was familiar with the joys of DICOM, etc. I paid €20 for a copy of my own brain-scan data on CD-ROM, posted to my house.

Pretty mind-blowing to have access to a scan of my own brain (well blood-vessels at least) on my home PC.

> However, the law allows the doctors to redact certain portions in your copy that they feel could be harmful to you.

Like what?


Scroll down to "Information Excluded from the Right of Access", particularly the bit about psychotherapy notes.

Also see "Reviewable grounds for denial (45 CFR 164.524(a)(3))", which includes things like "The access requested is reasonably likely to endanger the life or physical safety of the individual or another person" or "The access requested is reasonably likely to cause substantial harm to a person (other than a health care provider) referenced in the PHI".


> Another limited ground for denial exists if a licensed health care professional determines in the exercise of professional judgment that the access requested is reasonably likely to endanger the life or physical safety of the individual or another person. For example, a covered entity may deny a suicidal patient access to information that a provider determines in his professional judgment is reasonably likely to lead the patient to take her own life.

There was an interesting discussion earlier on here about the potential emotional harms of suggesting to a patient that they are likely to develop Alzheimer's within a few years (an AI based early detection system).

On the one hand, you might catch it and treat it earlier. On the other hand, it will color every interaction you have with others and cause stress every time you try to remember something. The potential harm may very well exceed the harm of not telling the patient (up to and including suicide).

If a doctor suspects something but lacks evidence, they may simply make a note to look for more signs at subsequent follow-ups. A patient seeing that may read more into it than is there, and subsequently suffer undue stress or paranoia.

Like any parts which could cause you to sever ties with them, find insulting, or sue them.

Patient claims to be suicidal.

"Extremely painful stomach cancer ruled out"

This may actually be financial. The rules vary by state, but most states allow practices to charge copying fees (even though they're generally no longer copying paper charts).

I think those are regularly charged if records are being obtained for legal reasons (e.g. drug/equipment manufacturer lawsuits) but are generally not charged if records are being sent to a new provider. Copies for personal use/records are probably on a per-provider basis.

That’s just clerk-speak for “I don’t feel like doing this”. You handle it like any other lazy customer facing person. Dig in and escalate if necessary.

Same experience. Try requesting through a Psychologist or case worker I have had success with that.

Support the OpenNotes movement. Patients have a legal right to view their records (with some limited exceptions). But it needs to be easy and happen by default rather than as a special request.


Forget "view". I want to own my records. It's my personal data that I've enlisted a professional to gather on my behalf.

Then their interpretation/diagnosis would be their information, arrived at by processing your raw data through their experience and education.

Once you view, you will own.

(Or so many years of experience with DRM says ;-)

can you elaborate on the distinction you are making between viewing and owning?

I presume they want to have control over who can access the file.

At one point recently someone noted on a X Ray that I had hepatitis. I asked my PCP; he said don’t worry, we don’t diagnose that with radiology.

I asked that it be removed.

No can do.

AFAIK I’ll go to the grave with a note from a random radiologist that I have hepatitis.

Google search suggests hepatitis is diagnosed via x-ray/cat scan.

Or maybe it was hipatitis? ;-)

Your comment reminds me of a series of Seinfeld scenes [0] which honestly scares me to death as I'm pretty sure all my doctors have labeled me as a hypochondriac.

[0] https://www.youtube.com/watch?v=ZJ2msARQsKU

Yes at least with paper they were typically tied to one hospital. Now with Epic they are basically automatically pulled over.

The product for this is called Care Everywhere for epic to epic transfers.

An example handout from Yale New Haven Hospital about it: https://projectepic.ynhh.org/Epic%20Newsletters%20and%20Fact...

You can also find out more about cross-vendor interchange at https://carequality.org/

Medicine seems like a technological wasteland. They put "notes" into text boxes and call it "using computers".

I wish I had both CS/SE experience and Medical experience so that I could understand what keeps this field in the 1970s. I have suspicions.

In my experience, it's a combination of a couple of things. First off, the field is heavily regulated (in the US anyway) and the penalties for violating regulations like HIPAA are incredibly high. Second, the field is currently dominated by major players such as Epic, so its pretty important to be compatible with them, but they don't really have an incentive to open up their ecosystem since they have such a stranglehold on the market. Finally, a lot of medical folks have been burned by technology in the past, and, in my experience, often view a lot of the tech they have to use as an insurance and government mandated evil, rather than a way to make their lives better.

Not to say things can't be improved, but there are a lot of factors that make it more difficult than a traditional B2B or B2C product.

> Finally, a lot of medical folks have been burned by technology in the past, and, in my experience, often view a lot of the tech they have to use as an insurance and government mandated evil, rather than a way to make their lives better.

Simply: those who choose the software are not those using it. So they go for recognizable names, certifications and how much money they'll get back for themselves.

The Epic ecosystem is actually pretty open now. They have multiple web service APIs with full documentation, and even provide a developer sandbox you can use to test client applications.


Epic also has an app store. You can write your own SMART on FHIR apps, then deploy them inside the EHR with full access to patient data.


The full FHIR standard can be a lot at first sight https://www.hl7.org/fhir/ but I'd recommend anyone having to store names, addresses or contact information to check how they do it. The last example for names is always fun: https://www.hl7.org/fhir/datatypes-examples.html#HumanName

> First off, the field is heavily regulated (in the US anyway) and the penalties for violating regulations like HIPAA are incredibly high.

This is why heavy handed regulation is bad. The people on the end of the regulation have to deal with a ton of BS to the point where it becomes security theater. These systems need their own departments, experts, and even legal teams. The overhead is massive.You think a company is going to roll over and eat the costs without trying everything in their power to side step it? Loop holes to outright lies will be used. Anything to trim the fat.

Happened to a place I worked at. New regulations meant more overhead. During my tenure I watched the quality department grow from the side job of the head engineer to a department of three people (manager, assistant, engineer) and an outside contractor. I then watched the employee quality drop proportionately as they put more money into putting lipstick on a pig than actually fixing problems and improving quality. As long as you satisfy the auditor or customer you look like a well oiled machine. Just don't look under the rug.

The regulations are outdated (fax is considered secure communication, as I've harped on before.) There's no patient visibility into these systems, so they don't see just how outdated and broken they are. I think that the biggest problem is this relentless focus on the short term-upgrading systems will cause problems now even if in the long run they'll pay huge dividends. Sort of similar to how medical professionals work extremely long hours with inadequate sleep.

I used to work at Epic as a software developer. My take on it is that the key explanation for why medical software is so bad is that it is so hard to even attempt to compete with established EMR's.

I could go on at length about this but I'll try to keep it short. Basically, imagine that you're a startup and you want to compete with Epic in providing a comprehensive IT solution to health systems. You will _at least_ need to:

1. Write software for every major medical specialty that is comprehensive enough to satisfy the specialists' expectations of domain-specific tailoring

2. Also ensure that these modules are flexible to accommodate intra-specialty variation (for example, oncologists vary a lot in how they divide stages of cancer)

3. Ensure that your software will comply with and help your customers perform well financially with federal, state, local, and program-specific (Medicaid, Medicare...) regulations

4. Go into a room full of health executives who are deeply weary and suspicious of health IT people (for better and worse reasons) and convince them they're better off risking a multi-year, extremely expensive transition project on your startup, which might not be around in a few years, instead of going to an EMR vendor that's almost-not-even-mediocre but stable like Cerner or Epic. (The "nobody gets fired for buying IBM" effect here is real.)

Clearly all of this requires a lot of work, and would require millions of dollars in funding and the poaching of some top talent in healthcare IT who know the lay of the regulatory land. As a result, most HIT startups (that I know of, at least) target something less ambitious than an enterprise EMR. Some target only a specific specialty (like home health or care management), others target small family practices (which are becoming increasingly rare as they are bought out by major health systems).

This is in a way bad for everyone except the software vendors, though, because without a competitive threat, there is little incentive for companies like Epic to undertake the risky, major rewrites which are vital for the company's long-term technical health. Epic still uses a typeless, (almost) data structure-less language called MUMPS for its server and DB code, and on the client side, all of it is still either in VB6 (yes, 6, not .NET) or a quite spartan home-grown JavaScript framework. The result is that bad code never gets totally thrown out, and Epic's developers are not able to benefit from the productivity-multiply amenities of modern languages, which include type systems and abstractions more powerful than subroutines and goto statements. Development then takes an order of magnitude longer than it might have, and the feedback cycle continues.

It seems like most of these articles focus on the documentation side.

There are other elements, like med/consult/lab/diagnostic imaging orders going to the relevant person/department instantly. With a handy interface for following them along, cancelling or re-scheduling them at any time.

A nurse doesn’t need to follow a provider around to find out what the new orders are, they show up automatically on their own task scheduler.

Providers can enter orders remotely.

Or allergies just getting verified instead of collected from scratch each visit.

Or billing/appointments happening electronically instead of manually completing forms.

This is true, but the interaction between the doctor and the nurse was invaluable. The context of those orders and the nurse's knowledge of the patient were used to come up with a plan together. Reducing that interaction to "order giver" and "order taker" greatly reduces the quality of patient care. I was recently in the hospital for a week and this was an issue several times.

That asynchronous behaviour happened in the paper world too. Make chart entries, send paper orders to pharmacy/lab, flag it for the other care providers.

There is a lot of copying and pasting data from one system (i.e. lab results) into the other. This is probably rooted in distrust of the system and fear that the lab results will become unavailable combined with a healthy amount of "cover-your-ass" syndrome.


The systems are built to serve administrators, not practitioners.

I think this is very much the case, and most administrators are looking to make sure that billing tasks are completed in a quick and fulfilling matter. IMHO, this is where people should be concerned: one of the primary goals of these products now becomes collecting the data that the insurance companies most want collected.

Some industries require higher table stakes than others, in the form of a defensive patent portfolio.

A principal of a failed medical records startup described it to me as an incumbent coming to them and saying basically "You have a nice disruptive startup. But we don't want to be disrupted. We have some patents. Their details don't matter. Our <unit of time> legal budget is greater than your last round of funding. End of game."

A blend of regulation and complex sensitive domain.. the medical field tried a few time going computerized, it failed badly. Half because of project management issue, half because of the field itself .. I think there should be a dedicated CS staff to grow solution cheap and on the fly rather than large upfront monolith that will fail to actually deliver value to patients and employees

There are multiple reasons for this, in no small part because what people think EMR's are and what they really are is very different.

Medical tech has the seemingly simple barriers voting has, but that once you incorporate it into a system they because heavily limiting and expensive.

I'm a Dr who has just quit my specialist job for the 2nd time to pursue a startup.

You'd think I'd do something medical - I've been in the field 10 years, I should have been able to find a problem IT can address?

To be honest the thought of doing a health IT startup just fills me with dread.

There's a recent New Yorker article by Atul Gawande covering this from a slightly different angle: https://www.newyorker.com/magazine/2018/11/12/why-doctors-ha...

He puts much of the blame on the generalization of computer systems, i.e. that the notes have to be readable by all sorts of staff and need to be systematized to accommodate that.

I recently built my mom a basic web app to automate building patient evaluations. She has been using paper forms with checkboxes for decades and they started requiring the info in digital format over the last few years. She had been copy and pasting from the digital version of the blank form into MS Word. It was time consuming, but still faster than typing it by hand. To be clear, a paragraph containing sentences is the format medical professionals are required to present this information in. Automating the boilerplate stuff actually gives my mom more time to type in the information that the paper forms don't anticipate and provide actual care to patients. The problem is not automation. The problem is unscrupulous executives who maximization profits at the expense of quality of service. The examples provided in this article are unethical and anyone who is caught dumping irrelevant data into important medical records should be held responsible.

My kids' pediatrician was part of a small office, which merged with a larger office that is affiliated with a large hospital and hence uses EPIC. She used to take hand notes on paper and was quiet efficient when she was with the smaller office. After the move I have seen her struggle with EPIC, and then recently hire a medical transcription service and be followed by a person taking notes so that she can focus on the medical stuff. And, of course I have no idea if the quality of her notes has suffered.

Believe it or not, Epic is one of the more provider-friendly solutions out there, according to many providers I've talked with (I work in the healthcare software industry).

Epic _can_ be not as awful as some (it's still a far sight from "friendly" in my opinion). The problem is that it's highly customized in each installation, and the vast, vast majority of them "customize" it in very provider-unfriendly ways (tons of irrelevant required fields for billing, etc).

Even in the best case scenario though, it's a lot of clicking around to find clinical information that may be relevant to a patient (which means it can often go unnoticed).

I do NLP with medical notes. What I have observed is that the redundancy between the note and information available elsewhere in the EHR in structured formats is pretty high, as is the amount of boilerplate (e.g. section headers and list templates that may not be filled in).

This makes machine learning using the notes difficult since the content is so muddied up. It's far from impossible to do useful things with them but there is a lot of noise. Still, some things require us to look at the notes. For these things we would much rather have them than not.

While it's preferred to have the information entered in a structured way, doctors find that more of a hassle than entering in the data free-text and it's also no good for retrospective analysis where we didn't know several years ago we would be interested in something and so no structured field existed.

Interesting insight! Where do you work?

I work for a hospital/health system.

Here's a fun thing about our system in the US. If you're taken to the emergency room, they'll ask your medical history. And not just once - they'll ask it in the ambulance, radio it ahead to the hospital, then make you wait while they ask you the same questions again and enter them into their system at the hospitsl. Then the next 3 doctors or nurses who come into your room do the same thing, asking you questions you've already answered. Doesn't seem to matter if it's obvious that speaking is painful for some reason (in a case I'm describing a family member had broken ribs).

We do this for a reason. Not only do different people ask specific questions that try to elicit different things, but patients stories evolve with each repetition. People don’t realize how much, but by the third time you’re getting that history, the picture is usually quite different from what the first history depicted.

And since history is 90% of diagnosis, this isn’t some little quirk. It plays a huge role in helping patients. Huge.

As a patient, I've been guilty of doing this deliberately. At ER triage, my priority is "get into a bed". Once I've been admitted, my priority is "get well". (And once I'm feeling better, my priority is "get out of here"...)

As a type 1 diabetic, if I have high blood glucose and nausea, I'm going to say the letters "DKA" to the triage nurse. I'll never bring it up again -- because the first blood chemistry test answers that question one way or the other.

Reminds me of what an attorney once said to me (I'm a retired neurosurgical anesthesiologist with 38 years experience; I occasionally served as an expert witness): "The client's story never sounds better than the first time you hear it."

I don't 100% trust what another person reports to me regarding another subject, I'd rather look into it myself and figure out the truth as I see it.

Regarding medical practice, why would a physician rely on what a high school graduate EMT obtains from a patient on the way to the hospital. Sure, it provides a starting point, but in no way would I find that comprehensive.

Similarly, an ER doc has a different perspective than a trauma surgeon, than a cardiologist. They all view things differently and ask different questions relative to their specialty.

Then the ass in the insurance cart has to do their thing. My wife almost bled out on the table when one of these idiots was literally blocking the medical people. I physically removed him from the area and almost got arrested.

I deal with various EHRs every day of my life, and 4-digits-worth of providers. The primary barrier is that practice managers are working to get data standardized, but get pushback from the providers who are busy doing their jobs being doctors and not data scientists.

Some EHRs can streamline via templates and workflow. Others don't. I've literally had practice admins not implement new practices that would document properly and facilitate easy reporting because they would not be able to sell the change to the providers.

I'm not blaming providers for the data issues. They have a job to do and they do it. It just doesn't always get documented in a reportable manner. There needs to be an easier way to document, or some kind of Middleware that documents for them.

I see people a whole lot smarter than me trying to use ai to interpret notes. I personally think they are just facilitating the ongoing poor documentation problem. And things will slip through the natural language cracks, and it could be a potential health hazard.

Agreed that 95% correct (or even 99%) AI probably isn’t the solution here, I’m surprised to see so many startups doing AI/NLP for doctors’ notes

This EHR data problem is something I've pondered for a bit.

One "simple" solution is to have departmental standardization of note format with thoughtful inclusion of what fields are typically pertinent. This doesn't solve the problem of care transitions but it might help standardize review in a hospital context.

The other thing that I've been pondering is something resembling a formalized data structure and language for note taking. For example, diagnosis X based on Y Z. Other probabilistic diagnosis A ruled out because not B not C yes D. Reduce free form notes to be as sparse as possible. Also there should be a reference system to point back to other notes / lab values / imaging which when clicked will bring up that data. Finally, a timeline which charts pertinent diagnoses, lab values, and changes over encounters. I'm not sure how viable it would be given the complexity of notes that my physician colleagues have showed me / what I've seen in research, but I'm curious.

Many departments do standardize their note formats. The problem is that the note is directly connected to billing, and the billing requirements are absurd. I'm a medical student, and I recently visited my PCP for a medication refill. I have no significant medical history whatsoever, and the visit took no more than 15 minutes as expected. A month later, I was given a bill for $330 stating my hospital visit was level 4 acuity (there are 5 levels, with level 5 being ICU-like care). I looked into how the billing level is determined, and I found this article explaining how components of the notes are tied to billing levels [1]. Basically, by including 6 elements to the physical exam rather than 5, you can bill at a higher tier. There are several other areas that are tied to billing like this, including the family history, social history, etc. My PCP had completely filled out her standardized note to include every little detail I had mentioned—many of which were totally irrelevant to my current issue.

I talked to some other physicians about this, and I learned that hospital departments use their standardized notes to include as much detail (i.e. bloat) as possible so that physicians can bill at higher tiers since billing is tied to the number of details included in the note.

[1] https://www.aafp.org/fpm/2003/0100/p29.html#fpm20030100p29-b...

The reason healthcare costs so much is that the feedback loop between the service recipients, providers, and payees (the largest of which is the Government which multiplies the mismanagement) is so perverse.

FWIW, my psychiatrist calls in my medication Rx (3 drugs taken PO daily) every December, with 11 refills. I've been on exactly the same Rx for 18 years, so it's not as if he's going out on a limb. Sure cuts down on appointments to see him.

Why did a visit to your PCP get billed as a hospital visit?

And which acuity scale was this? Usually the higher the number, the less acute you are.

I meant outpatient visit. My PCP is in the main campus of the hospital, and I wasn’t being rigorous with the terminology.

I’m using the CPT codes within the site I linked to. 99211–99215 are the codes that correlate to acuity, with 99215 being the most acute. I am aware of other systems like level 1 vs level 2 trauma centers. In that case, yes the level 1 is higher acuity. Maybe that’s what you were thinking of?

Got it. I perused the link but didn’t see any 1s,2s,3s,etc. I was just worried that the US started implementing a triage scale opposite from the rest of the world.

I’m more familiar with the (pre-)hospital triage scales in non-US countries: https://en.m.wikipedia.org/wiki/Triage#Canada

This is pretty unsavory, most visits are billed at 3.

All large hospitals and clinics already have standardized note formats.

For care transitions the HL7 C-CDA 2.1 Continuity of Care Document (CCD) format works pretty well. Modern EHRs can export a summary of a patient's chart in that format. Some data may be lost in translation but usually it works fine. But there are often still technical obstacles to transporting a CCD from one provider to another.

There are existing formal code systems for notes: CPT, ICD-10-CM, RxNorm, CVX, SNOMED-CT, etc. Those are helpful for billing and analysis purposes, but they can't replace free form narrative text for most clinical use cases.

My Primary Care Physician is unable to speak coherent sentences.

I'm half-joking, of course. The guy is top-rated, elected head of the state association. He's widely-regarded as a combination of both brilliant with diagnostics and good with people. He just can't complete a sentence when we meet.

Why? Because he's got some pad he carries around that takes up all of his attention span. He comes into the room, sits down -- and there's this struggle for his attention that I watch play out. It usually involves a lot of verbal grunts.

"So we've got this .... er.. .. and it looks .. hmmmm. .... So this is...."

This could go on for a bit. Eventually we get to either a statement or a question.

Frankly I'd think the guy was having some sort of mental issues if it weren't for the facts that 1) he used to be fine before they all started carrying around pads, and 2) he's fine outside the clinic.

I really hope that the tech community has helped make healthcare better. It's certainly had an impact.

Maybe not relevant for you, but one thing that has helped me with my doctor is that the first thing I do when I go in is sum up what happened in our previous couple of visits. My doctor doesn't have enough time to prep for my visit. I mean, he should, but he doesn't (been there, done that). So I give him the executive summary to speed things up. I visit my doctor a lot, so he now trusts me to give him accurate and useful information.

It's a shame too, because this sort of nonsense is driving people to go to doc in a box and urgent care type operations.

Some provider organizations hire medical scribes to sit in the exam room and do real time EHR data entry so that the doctor can focus on the patient.

I've done a good bit of thinking about medical note taking.

To me it's a little odd that hospitals are the ones who keep this information. I'd think that the records should belong to patients—it's about them after all. And that the patients would provide access to doctors or hospitals.

Right now I've got a personal medical journal that has things like:

* Sickness - Date Range and Notes

* Flu Shots - Date

* Injuries - Date and Notes

* Observations - Date and Notes

* Blood tests - Date and Photos of Tests

Before my yearly checkup (or if I have to visit a clinic) I review the last entries and open them on my phone incase my doctor wants to see any of them.

It works well enough for me, but seems like there could be a ton of opportunity for improvement. I'd love to have a system where my doctor could be notified and comment on new notes or events. Also the ability to bring in my scale, run tracker and other fitness data.

The problem with this is that a very small minority of patients are that diligent or reliable, for various reasons (dementia, forgetfulness, disinterest, mental illness, low IQ, substance abuse, not realising the information is required, brought in by ambulance unconscious and peri-arrest, etc.).

Here in the UK patients do have responsibility for some records - notably anticoagulation records and maternity / child health records.

I have seen literally one patient present with their anticoagulation record. I have lost count of the number of patients who come to appointments without their maternity notes or child health notes.

Even trying to get an accurate medication history from a patient is near impossible and we end up having to look at past hospital discharge letters, call their GP, or look on shared record systems to try and piece together what they are taking.

I'm all for patients "owning" their records but they must be held in a way that is accessible when needed regardless of human variabilities.

Notes intended for patients would have a different form than notes intended for doctors. Unfortunately medical records achieve neither. My notes are bloated with information needed to bill the maximum amount from the center of Medicare services, which ultimately hurts all parties.

The bloat obscures critical information from other doctors. Patients are unable to read a meaningful account of their care, and are charged more for worse services.

One thing I like about Japan, where I live now, is that every time I get a test done (and unfortunately I've had a lot of them recently), they send a copy of the results to me. I have everything my doctor has. He also writes personal notes for himself, but usually they are descriptions of symptoms when I complain about stuff. I could write them down too (and maybe I should), but those are his personal notes just to remind him what was going one when I visited him. I don't need access to that, as far as I'm concerned (although he shows me what he's writing and sometimes I even ask him to show me what he's written on a previous page).

> To me it's a little odd that hospitals are the ones who keep this information. I'd think that the records should belong to patients—it's about them after all. And that the patients would provide access to doctors or hospitals.

This is absolutely the future, with the ubiquitous devices and cloud-like infrastructure. But we are decades away from with with entire segments of the population not even having an email account.

I worked at the VA for over 2 decades, including the transition from handwritten to electronic notes. Wow. When I retired, the nursing notes for a patient visit were usually 2-3X longer than the docs note. The nursing note was entirely populated by templated text created by a hierarchy of supervisory staff tasked with satisfying all regulatory requirements. The poor nurses would ask the patient a series of prompted questions, click on the appropriate box, and a page of templated text would emerge. Actually finding useful actionable info in the nursing notes was impossible, or close to impossible. The docs began to demand, reasonably, that actual patient problems identified by the nurse be put in a specific area of the note rather than randomly scattered throughout 4-8 pages of templated text (which without this demand could be randomly intercalated with such useful info as "pt c/o chest pain when walking, much worse", found on page 5 of 8.

The docs notes were, in many ways, even worse. The notes required manual typing, and many docs are not trained skilled touch typists. So the two-fingered part of the note was often very brief and succinct. The templated portions were huge - impressive reviews of systems where you could not really tell if the specific items had actually really been asked or if the template just vomited forth a page full of text for administrative review.

Make a doctor function as a data entry clerk and this is what happens.

Doc here - spot on. 25% of my day is typing, reading, deciphering, referencing. I waste so much time not providing care.

I just want to say that I'm happy to see one of y'all on here. If doctors and engineers were to collaborate together directly to fill in each others' domain knowledge gaps instead of buying crap software from companies with poor incentives, some truly amazing things could happen.

I have a feeling it's more a case of misaligned incentives than just that people with the right knowledge are not involved. Medical professionals are certainly one set of stakeholders that EHR developers consider, but I'm almost certainly they aren't the ones given the highest priority. I would bet that billing, legal compliance and protection from accusations of malpractice are all given a higher priority than actually being able to effectively treat patients.

It's not as uncommon as you think. I'm both a paramedic and a developer for an EHR, and we have a number of other medical professionals (including a physician) in various product related roles.

I know that EHR companies surely employ both engineers and medical professionals, but are they able to freely innovate and explore, or are they bound to top-down bureaucracy with, as another responder mentioned, misaligned incentives? The kind of thing that I imagine would be a fully open source, open standards implementation that could allow easy portability of records between all providers.

I sympathize. I trained in a technical field, and thought I'd spend my day doing that, but probably 75% is spent on email, 10% is technical and the rest is errata.

I strongly agree that EMRs are making this problem worse, not better. And doctors seem to hate quite ubiquitously the extra amount of documentation they have to do. While there is a lot of evidence in some areas that EMRs have improved quality of care and patients' lives, I don't think this is one of them.

I was working for a large multi-state HMO during their transition to a major EHR (I'll let you guess, since I do not speak for either). I have a background in IT and was a systems consultant for a number of years.

On paper, I could get a relatively uncomplicated chest pain case from the ER to the hospital unit with all the orders for workup ready in 45 minutes.

With the EHR, we had abominations like double medication reconciliation and poorly customized order sets that ballooned my average admit time to almost two hours. And I was among the fastest. (I should note I am told these issues have improved, but it took years.)

Given that there was so much other stuff to do now and that ordering had become a nightmare of lookups and checkboxes, physicians under time pressure are going to economize where they can. Where they do is in the documentation, which is not generally reviewed and won't by itself prevent the patient from getting where they're going.

Now move this to an outpatient office where patient loads have not lightened and it becomes magnified.

It's a point of pride that I don't copy-paste my notes, but I have the luxury of being mostly administrative these days and most of my patient contacts are in a hyperspecialized clinic where I can do things like prewrite most of the note even before I go in a room. But it's killing primary care and it's probably making things worse at the very point where it needs to be made better.

What is a “double” medrec?

And what initial electronic order sets were implemented? Did the organization not just implement (as best as possible) the previously on-paper order sets?

It’s not a perfect approach (you can do things with an online form that you can’t do on paper and vice-versa), but it seems like a good approach to avoid (more) mass confusion on Day1.

> What is a “double” medrec?

I think that's when you need a second doctor to approve orders for another.

The fundamental problem in my opinion is that these EMRs were forced on providers and hospitals rather than emerging organically by choice.

I fully support the use of EMRs as some ideal, but it should emerge as the best option not as something that was forced. The result was a lot of EMR systems that would have never been adopted if there wasn't added pressure from government regulations. I strongly believe that EMRs would look pretty different if they were adopted organically without regulation.

It's really astounding to me that the elephant in the room of healthcare regulation isn't discussed more in public discussions of cost. As a result we end up with EMRs where the tail wags the dog, lack of transparency, lack of competition, lack of choice, etc. etc. etc.

I keep hoping the weight of the edifice will cause the thing to implode as it becomes so obviously unsustainable, but it's as if more regulation just births more regulation.

I’ll shoot: what extra documentation has to be done on an EMR that isn’t necessary on paper?

Has the “standard” been to document X, Y and Z, but providers felt (rightly or wrongly) that documenting those things is unnecessary, so they didn’t, but now they have to and it’s easily auditable?

Is the problem the medium or the implementation?

The old school method of sticking the charts to the foot of the patient’s bed has the same pleasant properties that using sticky notes on a board for tasks does.

Anyone that’s struggled with JIRA and just said forget this due to tool impedance will have a good idea of how painful this is. In hospitals I almost never see charts pulled up except on daily rounds. Sure nurses are great and smart people and usually remember everything, but they also work hard long hours and the cost of mistakes can be very high.

My favourite citation from the link:

“In fact, across this same EHR, clinical notes in the United States are nearly 4 times longer on average than those in other countries”

It seems that the EHR isn’t the root cause of the problem.

I was one of the people that gathered and analyzed the data that the cited study used and can't agree with your conclusion more. Sure, the EHR makes "note bloat" easier than paper but the difference in length across different countries (using the same software) shows that note length is more a result of the environment than the tool.

I think there is also a general misunderstanding of "the note" in an EHR context. The progress note is really just one aspect of a provider's documentation of a visit. Things like medications and allergies are generally indicated as "reviewed" elsewhere in the chart and yet all of this information is many times also entered into the progress note unnecessarily adding to note bloat. In the days of the paper chart the progress note ended up being the only summary of the visit and even though it's now just one piece of the visit documentation, it's still written as though it will be the only source of truth.

It’s a sad situation.

Unhappy users are much louder than happy or neutral users.

As a result, when a non-US health provider wants to do some informal research on implementing EHRs, they mostly read a lot of angry complaints.

Problem of medical notes have a name: bureaucracy. The hope is leaving it apart, and today it seems a bit utopia...

Also in terms of "numeric/digital" vs "paper" the point is ignorance: how many people outside IT world (and even inside) do actually know enough a desktop to take their own personal notes in an ordered, usable and useful thing?

IMVHO a so small percentage that we can probably know them all by name. Just take a look at a "common" mailbox: most of them are an utter pile of data, few with some incoherent taxonomies, few even with the sole inbox as an archival place. Than take a look a common "home directories": the very same mess. And if this is for personal and generic data do you think that those people are able to properly not only manage but share helpful information with digital systems?!

The medical journal is one of, if not the most, important inventions of modern medicine. I'm an MD and work with them every day.

But yes, the current infrastructure is not good.

1. Money

2. Legal liability (CYA)

3. We don't use outcome-based medicine

1. There's an old saying in healthcare that patient care is always first, but money is a close second.

2. Sort of yes, but I've heard it more time from managers who use it more of an excuse for not wanting change rather than it being a legitimate argument (i.e. from people with little to no legal training).

3. This is changing slowly. The Affordable Care Act and it's little known cousin MACRA have started to shift the entire system (albeit slowly) towards more outcome based measures, primarily through Medicare. Major payers are following in their steps. Not happening overnight, but any major healthcare executive sees the writing on the wall and is taking these considerations into account for their investments.

[0]. https://www.healthaffairs.org/do/10.1377/hblog20180810.48196... [1]. https://www.healthaffairs.org/do/10.1377/hblog20180810.48196...

3. No, it's not.

If you go in for a wonky heart, and you get some kind of imaging done on your chest, and then spot something in your lungs, they SHOULD ignore it. Outcome-Based Medicine says that's what they should do. They CAN'T ignore it.

Cardiologists actively want the lungs REMOVED from the images they order, because they don't want to accidentally notice any lung nodules. That's crazy!

And that's just one example.

We don't know how to properly ignore the things we should.

And if something IS there, and there COULD HAVE been action taken on it, then the people who looked at the images are potentially liable in court. Or at least in settlement.

The whole thing sucks.

Yes, it is. You appear to be conflating my point of how healthcare is changing with regard to payment structures with clinical guidelines which tend to have potentially more subtleties.

There are some areas of healthcare where it is very cut and dry what defines good healthcare management. These are where we've developed good reporting outcomes that tie closely to clinical and resource utilization outcomes from the published literature. Think of your high volume routines cases such as diabetes (monitoring of A1C)[0] and knee replacements [1] that make of a large portion of health care cases. These are certainly not covering all healthcare episodes, but represent areas where significant fat can be trimmed.

With regard to your above clinical case, there are specific approaches for (what I assume is an incidental finding from a coronary CTA) reporting lung nodules and requesting follow up studies [2]. However, this represents an area where there is significant good faith professional disagreement of reporting.

I will agree that high-evidence clinical guidelines are not always followed, and payment reform has not been influenced all medical professions equally. The way healthcare is delivered is changing, and is being highly influenced by national policy level decisions.

[0]: https://www.healthaffairs.org/do/10.1377/hpb20121011.90233/f... [1]: http://files.kff.org/attachment/Evidence-Link-FAQs-Bundled-P... [2]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5903561/

The medical field doesn't have the discipline to ignore signals that it knows are meaningless. That's what I'm driving at.

Also, healthcare absolutely sucks at pain management, specifically in being disciplined enough to say no to opioids.

I refuse to believe (beyond a bad email notification , which is not acceptable for medical information) that being elaborate or non-concise is a problem. Why is 4x more medical density a bragging point , in other words?

I read number 1 —- “money” — as “doctors lie about what they are doing to get paid more by your insurance company”. Is that unfair?

One "solution" is sometimes to use speech-to-text. The mangled results would be hilarious if they weren't frightening.

I know some places have scribes (often students), and I wonder why they aren’t more common given how valuable doctors’ time must be

Spec. Off's [1]

  - Doctor enters your visit (encounter), cross your fingers that his system has the most up-to-date medical codes (e.g. snomed, cpt, icd, etc)  
  - Doctors notes for that encounter are potentially entered as a text area in one system (u/petermcneeley). Can be notes at the encounter level or for a specific diagnosis/lab result/etc.
  - The codes vs free text, is what we refer to as discreet and narrative/free text.
  - The current IHE spec. [2] (last updated in 2015?), allows for codes to be interpreted from narrative text if a valid code is not provided. I think there are a few startups that have popped up here that are trying to make sense of the narrative text.
  - That same spec would be great if everyone followed it but they have to get their system to bend a little bit or throw an integration engine in front of the problem to play nicely with others. (u/nradov)
  - Start sending those back and forth and you either end up losing those notes or butchering them up.

  - There are some orgs (e.g. DoD, VA, Sequoia, etc) that have everyone follow the basic requirements but then add their own flavor on top. [3]
  - FHIR [4] is here, but I think everyone is already scrambling or haven't had the need to make the cut over to it until its government mandated. I have to say this has been the easiest spec. to grok, but it is still way too flexible for these companies to mess up. A cut over to FHIR for everyone should ideally be that you have to use the Hapi FHIR models [5]. Maybe have a way for Hapi to sign the models on their way out?

Sorry, this turned out to be more of a rant, but I stare at this stuff everyday. There are a few other folks on the thread that know the industry as well that have some good info too.

[1] https://media1.tenor.com/images/af0c71048d5a130cefc335423c59...

[2] http://www.hl7.org/implement/standards/product_brief.cfm?pro...

[3] https://xkcd.com/927/

[4] https://www.hl7.org/fhir/

[5] http://hapifhir.io/

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