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I've ranted elsewhere on this topic...but it's far, far worse than anybody realizes, and there is no incentive to make things better for patients. Every other factor is literally stacked against them.
Yes. However! Government regulation could cut the knot. If HHS mandated standards for data at rest - since we never got a DICOM for charts like we did for images - the companies would have to write translates. When that happens, vendor lock in goes away and fewer people die.
Mandating a single, simple standard for medical purposes would probably be the best thing that they could do. I just don't have a lot of faith in it ever happening.
Doctors, too. One sentence in the stimulus bill mandating "meaningful use" of these mandated systems ballooned into ~700 pages of regulations, and a bunch of consultancies to help keep doctors and hospitals out of trouble, according to a friend in the field.

And there are many related stories about doctors focusing on their computers instead of their patients as they fight with these systems (I kinda saw that once, but in all fairness the doctor had lost all her paper records in a tornado, I don't think she had anything left but her appointment book). In one worse case I read about, fighting the system until there were enough lights turned green.

In general this is a very hard field, e.g. the U.K. NHS more ambitious effort was an abject failure: https://en.wikipedia.org/wiki/NHS_Connecting_for_Health

I know several doctors who have retired rather than deal with the EMR mess, and these are work 80 hours a week doctors, vs the new, gentler work regular hours kind.

In addition, the doctors I know who continue to practice have had to reduce their patient hours due to the amount of time EMR takes up.

Many hospitals went sold significant assets (like office building - assuring guaranteed rent) or took on loans to fund their EMR purchases. Hence, deals with these dollar amounts are tough to reproduce for many hospitals.

Epic has made major strides in supporting connectivity between EMRs. Partially, through standards like direct - http://directproject.org/. This problem will be largely solved in three to five years. Actually, a growing number of geographic regions of the US already have seamless EMR records exchange

From the DirectProject blog, on 08/11/2011:

"Moving on... It's been a fantastic ride"

Coding errors abound in this space. For example, you can go to the CMS.gov to lookup ICD codes.

This is what you get when you lookup the word "finger"

https://www.cms.gov/medicare-coverage-database/staticpages/i...

It contains hundreds of entries.

Here are just a few selected at random:

S61.352S Open bite of right middle finger with damage to nail, sequela S61.353A Open bite of left middle finger with damage to nail, initial encounter S61.353D Open bite of left middle finger with damage to nail, subsequent encounter S61.353S Open bite of left middle finger with damage to nail, sequela S61.354A Open bite of right ring finger with damage to nail, initial encounter S61.354D Open bite of right ring finger with damage to nail, subsequent encounter S61.354S Open bite of right ring finger with damage to nail, sequela S61.355A Open bite of left ring finger with damage to nail, initial encounter S61.355D Open bite of left ring finger with damage to nail, subsequent encounter S61.355S Open bite of left ring finger with damage to nail, sequela S61.356A Open bite of right little finger with damage to nail, initial encounter S61.356D Open bite of right little finger with damage to nail, subsequent encounter S61.356S Open bite of right little finger with damage to nail, sequela S61.357A Open bite of left little finger with damage to nail, initial encounter S61.357D Open bite of left little finger with damage to nail, subsequent encounter S61.357S Open bite of left little finger with damage to nail, sequela S61.358A Open bite of other finger with damage to nail, initial encounter S61.358D Open bite of other finger with damage to nail, subsequent encounter S61.358S Open bite of other finger with damage to nail, sequela S61.359A Open bite of unspecified finger with damage to nail, initial encounter S61.359D Open bite of unspecified finger with damage to nail, subsequent encounter S61.359S Open bite of unspecified finger with damage to nail, sequela

Well, this is the notorious ICD-10 "upgrade" from ICD-9. Which has some "wonderful" codes, e.g. try https://www.google.com/search?q=icd+10+codes+funny

Everyone's unfair favorite is "V97.33XD: Sucked into jet engine, subsequent encounter."

Unfair because that doesn't mean you were stupid enough to do that twice, but had to see a doctor after the first visit.

"W55.41XA: Bitten by pig, initial encounter" is OK, it happens. But "W61.62XD: Struck by duck, subsequent encounter." WTF??? I'm from a hunting family, and I've never heard of smallish birds like ducks harming people in this way. Ditto "W61.12XA: Struck by macaw, initial encounter" and "W59.22XA: Struck By Turtle" (now, being bitten by a big snapping turtle is horrific, but being struck by any turtle???).

But this remains the most bizarre of all I've heard: "V91.07XD: Burn due to water-skis on fire, subsequent encounter​."

OK, at least we can laugh about ICD-10. For now.

That is funny.

The wide range of codes is a great setup for coding errors: errors of omission, imprecision, using multiple codes to describe an event when a more accurate single code exists, etc.

In the best case scenario, every doctor/nurse/PA/etc would have a technician follow them around just to manage the coding on EMRs.

OK - I had to confirm the water-skis. You're not kidding:

https://www.cms.gov/medicare-coverage-database/staticpages/i...

Has Monty Python taken over the ICD?

I don't blame you, I should have tried that myself.

I'm still trying to figure out how that could be a legit code. Jet skis, of course. But ... ah, while trying to see if anyone else had a brainstorm, I found a better one that eliminates a lot of possibilities:

V90.27XA: Drowning and submersion due to falling or jumping from burning water-skis, initial encounter

Got that from http://skepticalscalpel.blogspot.com/2011/09/icd-10-codes-dr..., which suggests:

I have come up with an answer. Someone, possibly an actor from the Jackass series of movies, sets up his water skis on milk crates in the back yard. The skis are positioned over a kiddie pool. He mounts the water skis while an accomplice sprays them with gasoline. The skis are lit, and the man jumps or falls from the burning skis, submerging and drowning himself in the process. Luckily there is an ICD-10 code for that.

Maybe we're being trolled? You know, there are trolling motors, but they're (all?) slow, battery powered ones to avoid disturbing fish, not at all suitable for water skiing.

When I paid accident claims, I paid a surprising number of claims for 2nd degree burn on lower leg from motorcycle exhaust pipe. You make me wonder if there is a code specifically for that.

/weird but true

Pretty much every code added to a code set like the ICD is added because someone, somewhere needed it, and didn't have it in the previous version.

And ICD-10 codes are used for a variety of purposes -- statistical, billing, etc. -- so if its important for one of those uses, its going to get added. Especially since, with the degree of automation preferred now, if it a distinction could reasonably affect any decision in any of the roles that the code set is used for, it needs to be represented in the code set.

And ICD-10 codes are used for a variety of purposes -- statistical

And that's where it goes off the rails, this revision is trying to serve too many masters, in which actual health care is subservient to collection of data for the usual nosy suspects. Did anyone even contemplate the trade-offs?

And even then, look at all those codes for bites of fingers. Are you really insisting they will provide anything other than fancy looking statistics for self-important bureaucrats?

> And even then, look at all those codes for bites of fingers. Are you really insisting they will provide anything other than fancy looking statistics for self-important bureaucrats?

While I don't know the history of the particular codes, a lot of the hyperspecific codes are driven by needs of insurance payers (public and private) and their desire to incorporate elements that would otherwise be identified in (comparatively costly) non-automated review and provide the necessary resolution in coding that they can be identified and distinguished without that review and the associated cost.

Driving down that area of administrative costs is a different thing than providing fancy looking statistics for self-important bureaucrats.

non-automated review and provide the necessary resolution in coding that they can be identified and distinguished without that review and the associated cost.

What type of review - automated or manual - requires the categorical specificity of distinguishing between 359+ different types of marginally varying finger trauma from bites? This is just madness. That anyone would even suggest that that level of specificity was even useful, never mind required, is bureaucratic madness.

Step back from the tree and you can see the forest burning.

Believe it or not, these codes are used to define contracts and aid in payment all the way from patient to broker.
So, pretend I'm a doctor and tell me, will I get paid more for S61.354D Open bite of right ring finger with damage to nail, subsequent encounter

Or S61.355D Open bite of left ring finger with damage to nail, subsequent encounter ???

And with such specificity, why include this code:

S61.359D: Open bite of unspecified finger with damage to nail, subsequent encounter

I'm assuming "other finger" is the one between your little and middle ones, and we'll all sleep easier knowing that, while not found with jhulla's search, your left and right thumbs have not been neglected.

I actually used to pay insurance claims. Sometimes, the question being answeed is how many fingers we are paying for. To know that, we sometimes need specifics.

There were enough fraud claims where someone was wanting to be paid for a third leg amputation that we joked we needed LL (left) R (right) and M (middle) as our designations instead of just L and R.

Generally, you don't get paid an amount for a diagnosis, you get paid for the services you bill.

Whether a payer accepts that the specific services you billed for are medically appropriate and thus pays them depends, often, on the diagnosis they are treating. (And, often, there are three possibilities: the payer pays the claim directly, or the payer requires additional supporting documentation which is manually reviewed before making a decision, or the payer denies payment outright.)

The more detail diagnostic coding provides (and, for that matter, the more detail procedure coding provides), the more an automated system can move cases that would otherwise be in the manual review category (which adds costs for all parties, and delays) to an automated decision (which is quicker and cheaper for all parties.)

> What type of review - automated or manual - requires the categorical specificity of distinguishing between 359+ different types of marginally varying finger trauma from bites?

Quite likely, review for medical necessity of the particular treatments billed for those bites. Which probably have wildly varying costs, and different indication; precision of diagnostic coding reduces the degree of circumstances in which it is necessary to require additional supporting documentation to be sent and have a human review it; manual review adds time and cost to claim processing, and is something everyone -- payers, providers, and patients -- benefits from reducing.

> That anyone would even suggest that that level of specificity was even useful, never mind required, is bureaucratic madness.

Only to the extent that medical insurance is inherently "bureaucratic madness".

They also are used for insurance purposes, how much should a treatment cost given so so diagnosis. ICD-10 attempts to put things in a bit of a flattened hierarchy with prefixes and ranges.

Whether you are "struck by turtle" while playing Mario Kart, or smother yourself with a pillow [1], most codes are derived from recorded events. Then there's the algorithmically appended first, second, etc. encounters.

[1]: http://www.icd10data.com/ICD10CM/Codes/S00-T88/T66-T78/T71-

> Everyone's unfair favorite is "V97.33XD: Sucked into jet engine, subsequent encounter."

Not as unfair as it seems! Someone got sucked into an A-6 Intruder on a carrier with only minor injuries due to his helmet shredding the engine. https://www.youtube.com/watch?v=5jxcSY1AwrM

> Struck by duck

Could mean lovestruck? :)

> Struck By Turtle

Eagles have been known to drop turtles from flight, in order to crack them open. The ancient Greek playwright Aeschylus is supposed to have been killed by a tortoise in this manner.

Damn, I forgot that. So it's not completely insane.

Except in that, as I note elsewhere in this subthread, it has no more to do with providing better healthcare than the myriad insane variations of finger injuries that started this subthread.

While it seems overkill, it is unambiguous. Errors are easy to make in medicine.

When I was a neuro tech, I remember doing a nerve conduction study on a patient, on one arm only, and the patient had no abnormality, when went into my report. The doctor doing the final report for the record copy/pasted from his list of stanzas, and forgot to switch 'left' in his copypasta to 'right', which I caught. This particular doctor was perfectly competent; it's just that there's a thousand ways to make errors like this (and yes, copying from a list of stanzas isn't the best method, but neither is individually typing out the same diagnosis paragraphs again and again).

Being unambigous with which side of the body and which body part is very important in medicine.

OK, that's a good argument, although the system of coding each as a separate code without a "system" is crazy (for a bit I thought they were at least using Sinister/Dexter, but that didn't seem to be the case). But probably required due to legacy systems.

Although I'd say this is still an experiment in which will result in the fewest mistakes. Maybe someone should have paid Kaiser or the like to try this out first to find out some of the consequences?

The lack of a system to the coding is crazy. You find all sorts of nonsense next to each other. Unfortunately, there is a hell of a lot of politics in medicine - infrastructural change is extraordinarily difficult.
Moderate to large hospitals generally have full-time coders, whose job is to take the records generated during a patient's stay and figure out which codes apply. There's a lot of money in what's called 'up-coding', or using a similar code that pays more.
While lower population areas are losing their only hospitals due to "one size fits all" stuff like this (see e.g. http://www.usatoday.com/story/news/nation/2014/11/12/rural-h...), and in my "moderate" sized market, all the doctors I know of are now working for "the man", one of the two big hospital complexes, or otherwise outsourcing this sort of thing to them.
You're right, that's a huge problem. Critical access hospitals are really struggling, and many smaller hospitals and clinics are getting swallowed up by big hospitals somewhat nearby. A side effect of that is that the newly-acquired sites are often migrated to the records system of the new owner, which is creating silos of medical records. The problem is that the silos still aren't connected to one another, which means the vast majority of hospitals still have to transfer records through fax. I really wish I was joking about that.
This is allowing companies like Kno2 to make quick inroads into the space though.
If you're interested in US Healthcare, I can recommend "The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care". I was surprised to learn that France, for example, has private doctors, private hospitals, and private insurance companies (gee, somehow thought they had 'socialized medicine'). It spends half what the US does per capita and is ranked #1 by the WHO (the US is ranked #37, just behind Costa Rica).

How do the French do it? Well, it's not that hard. All other developed nations using the Bismarck Model (like the US, feel free to google that or any of this) have a few structural differences from the US. The first is a particularly obvious one: insurance companies are non-profit (though privately held and operated). Fees are entirely standardized and printed for all to see ("reference pricing", structurally like medicare/aid). Doctors and hospitals make a lot less money (Doctors drive volvos not porsches). Doctors don't pay for medical school. Claims are never denied. Doctors are rarely sued. Doctors are paid very quickly (3-14 days). I'm not making this up. In essence, the system squeezes all of its players to be as efficient as possible.

In the US, the exact opposite is true. Most of the players are incentivized to drive costs up. A private FOR PROFIT insurance company (which no other developed nation allows) by definition wants to suck all the money it can from the system and pay none of it out (to wit: when an insurance company pays a claim, it is called a "medical loss"). Hospitals are in an arms raise of acquisitions (to better negotiate with insurance companies) and over-built, fancy facilities (to attract patients and justify the exorbitant costs). Doctors start their professional career by having to pay off huge student loans. Insurance companies, hospitals, and (to a much lesser extent) doctors collude, in effect, to steal money from all the other employers out there (in insurance premiums) and from patients (co-pays, denied claims, and an ever-growing number of out of pocket expenses).

None of this is the fault of insurance companies, hospitals, or doctors. It is entirely the fault of our incompetent no-account and utterly failed political system. US healthcare is corrupt because the US political system is corrupt. To fix it, we need to fix that. Entrepreneurs cannot fix US healthcare in the current regulatory environment. The incentives are completely wrong.

EDIT: added a missed "system" after a "political".

EDIT2: I forget to mention the most relevant piece. The French, since 1998, have had 'La Carte Vitale'. It is an electronic medical record they carry around with them. Every doctor's office has a reader. It is a government standard, government owner, and government operated. Epic makes money by _NOT_ sharing its data if it can get away with it. Switching costs are its friend. It's called 'vendor lock in' and its why the government should be doing this small piece of it. It's like building an interstate highway. It lets commerce happen.

I'm surprised I don't see any comments about the FHIR api here. It's a project seeking to standardize a RESTful api for clinical encounter data that's gaining a fair bit of traction.

If the existing EMR companies don't manage to subvert its goals, the problem of data interoperability will be largely solved within the next 5-7 years.

That's the best news I've heard in a while. I was just complaining earlier today, that I hate the way I have to login to so many different EMR systems to look at my medical records, and there's no interop between them, or (mostly) any convenient API to download data.

I want record from my GP? FollowMyHealth.com

I want records from my cardiologist? UNC's EMR system.

I want records from my bariatric doctor? Duke's EMR system.

I want records from my dermatologist? Yet another system.

I want records from my othopaedist? You guessed it, yet another system.

What I want is to be able to put ALL of my medical records, AND my "fitness" information (stuff from Strava, Fitbit, etc.) into one freaking place. This current setup is horrible. :-(

There are a few startups that do this. gliimpse picknick health
How would that work? The existing provider would have to provide an API or export feature, or else you'd be back to re-entering shit by hand. My problem is that most (if not all) of these existing systems seem to lack any kind of API or ability to dump data in a machine readable format. :-(
They are using the view, download and transmit aspects of meaningful use 2. So they either scrape the portal or parse the downloaded file. The downloaded file is often a variant of c-CDa. However each portal can be different so I assume they are doing the epic and cerner (large dominant players) first.
The more irritating detail to me is that very few places want your records. Even if you carried your up to date medical records on you in some kind rugged secure flash drive, you're likely to be told "thanks but no thanks" if you suggest any medical professionals should look at them.

9/10 they don't want to look. I know there's lots of valid reasons why so I understand that part, but there's a bigger problem it speaks to. To me the greatest failure of modern medicine is that we have a word full of doctors (specifically, general practitioners) who have no time to stay current in their medical knowledge or to learn anything beyond the superficial details of a patient before pronouncing their diagnosis and moving on.

I truly miss having a GP that not only dealt with my medical matters for the first 24 years of my life, but 26 years of both my parents, and close to 20 and 15 years for my siblings as well. There's no way to replace this knowledge now he retired.

Hmm... I haven't encountered that, at least not to that degree. In fact, my cardiologist was happy to get some lipid profile numbers from me, that I read off my phone to him (I had emailed them to myself for safe-keeping) based on my most recent bloodwork done at my GP's office.

Likewise, I just started visiting a new internist who specializes in diet/lifestyle who supervises people going on a ketogenic diet. He asked if I had recent bloodwork, and as it happened, I'd just had a physical about two weeks before at my GP's office. So I fired up the "Follow My Health" app on my phone, pulled up the relevant test results and handed him the phone. He took the notes and says "Great, you just avoided having to have blood drawn today".

Ditto. My current GP was delighted when I lent him my copies of my lab work going back to 1996 for him to copy, and when in every visit I give him copies of updated spreadsheets showing the history of the relevant results going back then, one each for PSA and lipids and the like. Asked me to add liver enzymes to the latter after my previous visit revealed they'd spiked, so that he'd have a better picture of what was going on after the two month later followup to that.

Any doctor who's not interested in this sort of thing when relevant should be fired on the spot; remember, whatever the "God complex" or the like they require to stay sane making decisions that will inevitably sometimes be wrong and harm or kill a few of their patients, they still work for you.

See my comment below; to that I add, have you tried delivering these as paper? I.e. general history on one page (although in my experience that's normally that's covered in a single page of checkboxes), and lab results in both raw and condensed spreadsheet form for the relevant ones?

Note that absent a really difficult medical history, no doctor has time go back through a long history by (many) other doctors trying to find what's relevant and what's not. A "just the facts, mam" summation of your history is a much better start.

I fact, that's exactly what my current psychiatrist got from my previous one who'd seen me for a decade before I moved back to/retried to my home town. Probably took the former a few extra minutes. but he preferred that approach and I'm sure it was easily condensed to a page or so, even a paragraph or two would be sufficient.

That said, my mother was an RN and my father managed the business affairs of a bunch of doctors while I was in middle and high school, and one was our primary hunting partner. And I was on a biology track before I discovered how much better I liked chemistry. So I'm on top of this sort of stuff a lot more than most patient will be, but I suspect this sort of "just the facts, mam" approach could be more generally applied to our current system with benefit.

And if I were you, I'd fire those 9/10ths of ... overly focused doctors until I found a good one like your old one. Did just that after I found a very good one who then went to work for the man in the ER room before the multi-doctor practice he was in failed, then I had to fire two doctors who would not stop forcefully pushing statins, and finally found one who was willing to rationally discuss them, e.g. respect that I had enough of a biology background to balance the picture presented to him by the usual suspects.

While FHIR is certainly making health records development more approachable and sane for developers, it isn't going to fix the large-scale data interoperability problem. Even if we completely suspended disbelief and assumed it was perfectly and consistently adopted across all EHR products, it still is just a structured way of exchanging data like HL7- the much more complicated issues preventing semantic interoperability of clinical data still exist.
Epic actually had a FHIR mini-conference of sorts with a couple organizations this week. Prototypes have already been available to test with for a few months for customers to make their own apps with.
So, what's the most common standard for PHR information?

I've only heard of HL7 which is basically paying money for a bunch of XSDs (of course)

If I understand your question, probably a CCDA. I think the real problem is no system has a reliably comprehensive picture. After that, it is challenging to find a reliable global patient identifier. Epic says they have the health records of 175M americans. I would say they have parts of records of 175M americans and probably a lot of dupes.
Given that these numbers are individually sourced from customers, customers own their own data, and all interchange is P2P--there's not a good way to really count. Customers own their range of member-numbers as well.

Plus, the whole thing about identity is even more difficult, you can't go by name, SSN, and DOB alone.

As far as I know, HL7 is mostly used between internal systems within an organization.

For sending actual patient data, allergies, conditions, CCDA is usually used for communication with non-Epic EMRs belonging to other organizations.

As an aside, CCDA and HL7 don't support rich data well, so they usually end up as base64 encoded PDFs.

There are different versions of HL7. Currently the common one is some line and character delimited format, HL7 v2.

{OBX,ORC,etc.} |data|||more data|number|||identifier| Which is basically a member of the multimap with the first word as the key, with an indexed map of text.

It's not really a standard like HTML, at least no EMRs, interface systems, instruments, and so on abide by them.

So, whenever systems hook up, there has to be setup / build to map what text means what to each other--although the positions are generally agreed upon.

When interfacing systems together, there is both a legal and a technical cost that must be dealt with. With highly configurable systems on both ends, figuring out who's terms / categories equate on the other side and back is not an easy task and most organizations hesitate to go through with it unless necessary.

The tools are there, it's just that when everyone customizes their own universe, it's unlikely to work out of the box. You can stick a german and a guy from holland together in the same room, they might have some shared words, but whether they can hold a coherent conversation in their native tongue is a different matter.

Given we're 320M people you could say "we've spent billions" on many many things and not solved it. We've spent billions on food this week -- and we're still gonna get hungry!

"Billions" is a scary sounding number that doesnt mean much anymore. Show me 10s and 100s of billions.

Athenahealth, the company I work for, makes cloud-based medical systems with a heavy focus on user experience and interoperability. Our More Disruption Please team is working hard to bridge the gaps in the healthcare continuum, and we do publish our API: http://www.athenahealth.com/developer-portal

Oh, and if you think your code's good enough to fix healthcare, we're hiring ;D

Its a pretty challenging industry, isn't it?
Yes, there's a lot of bureaucracy involved, and providers are picky users =)
Oh yeah, I definitely am aware of that one. I heard you guys were doing an initiative for getting providers up and running on Athena in 5 days. Neat stuff!
Yeah for the sake of healthcare I hope athena continues to grow. Keep up the good work!