How Did Our Medical Notes Become So Useless? (opens in new tab)

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...

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.

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.

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.

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

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!!

"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 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.

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.

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".

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.

https://www.opennotes.org/

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.

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.

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.

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.

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.

https://www.newyorker.com/magazine/2018/11/12/why-doctors-ha...

The systems are built to serve administrators, not practitioners.

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.

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).

Interesting insight! Where do you work?

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.

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.

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...

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.

Epic provides progress note templates:

http://ist.jefferson.edu/content/dam/ist/epic/SmartList.PNG

http://3.bp.blogspot.com/-13TVMTrcPkA/UPWKAB_rTGI/AAAAAAAABD...

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

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.

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 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 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 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.

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?

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.

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...

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