
We've Spent Billions to Fix Our Medical Records, and They're Still a Mess - prostoalex
http://www.motherjones.com/politics/2015/10/epic-systems-judith-faulkner-hitech-ehr-interoperability
======
MDNukem
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.

~~~
mindcrime
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. :-(

~~~
techdragon
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.

~~~
mindcrime
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".

~~~
hga
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.

------
maerF0x0
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.

------
jhulla
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...](https://www.cms.gov/medicare-coverage-
database/staticpages/icd-10-code-
lookup.aspx?KeyWord=finger&bc=AAAAAAAAAAACAA%3d%3d&)

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

~~~
hga
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](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.

~~~
dragonwriter
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.

~~~
hga
_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?

~~~
dragonwriter
> 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.

~~~
CountSessine
_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.

~~~
jjm
Believe it or not, these codes are used to define contracts and aid in payment
all the way from patient to broker.

~~~
hga
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.

~~~
dragonwriter
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.)

------
Floegipoky
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](http://www.athenahealth.com/developer-portal)

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

~~~
cordite
Its a pretty challenging industry, isn't it?

~~~
Floegipoky
Yes, there's a lot of bureaucracy involved, and providers are picky users =)

~~~
cordite
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!

------
sgarg26
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/](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

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

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

------
angersock
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.

~~~
sachinag
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.

~~~
angersock
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.

------
methehack
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.

------
ddw
Definitely not a fan of Epic but the article could have mentioned this:
[https://open.epic.com](https://open.epic.com)

------
raverbashing
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)

~~~
methehack
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.

~~~
cordite
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.

------
bossmojoman
This is allowing companies like Kno2 to make quick inroads into the space
though.

