
Paper Trails: Living and Dying with Fragmented Medical Records - anarbadalov
https://undark.org/article/medical-records-fragmentation-health-care/
======
maxxxxx
I think the ownership of medical records should be reversed. Right now the
doctors behave as if they owned the records and the patient has to ask for
them. Instead the patient should be the owner of the records to which the
doctor gets granted access as needed. All test results, X-rays and everything
else should go into the patient's record and owned by the patient.

~~~
nradov
That sounds great in theory. But how could we actually put it into practice?
Who will build and maintain that personal health record system and where will
the funding come from? Patients are generally unwilling to pay. Google,
Microsoft, and Apple have tried to build PHRs to some extent but functionality
and adoption have been limited. No one really trusts the government to
maintain a big centralized repository of patient data. But decentralized
systems are highly complex and prone to breakage. No one has really found a
solution yet.

Health information exchanges and payers (insurers) have been doing great work
lately to facilitate authorized providers sharing data with each other using
standard formats such as the formats published by HL7. So that does at least
prevent the need for duplicate lab tests and reduce the risk of medication
errors.

~~~
fpanettieri
Sounds exactly like a proper use case for a blockchain.

~~~
nradov
This is not a proper use case for blockchain. Blockchain technology is
primarily for allowing transactions between parties that don't trust each
other. That's not a problem we have in the US healthcare system. Providers are
all known and generally licensed by the government. They adhere to strict
rules of conduct, and if one of them breaks that trust they are subject to
civil and criminal penalties.

As a technical matter, no one has yet demonstrated a blockchain that can scale
to the amount of data and transaction volume required to maintain a patient
chart for everyone in the country. Especially if we include images and genome
sequences the data volume is in the exabyte order of magnitude.

This is fundamentally a political and economic problem. Throwing immature new
technology at it won't solve anything.

~~~
fpanettieri
First, lack of trust doesn't imply bad actors in the system.

Second, a blockchain creates a decentralized public ledger. Patients can be
owners of their records, and sign to share access. There is already a working
implementation of this technique in Filecoin.

Third, PoW is the 'new technology', a blockchain is just a data structure.
e.g., Binary trees are no good for the U.S. healthcare system.

I know there are politics involved, but we are not politicians, why not try to
solve the problem with the tools at hand?

~~~
maxxxxx
There may be some use of blockchain but it doesn't solve the problem of
incompatible data formats. That's the real problem.

~~~
lostlogin
Combined with the need for change. Reports are regularly altered and amended.
How would this be handled?

------
davycro
I needed medical records from a hospital across town for a patient on my shift
last night. Unit clerk called the hospital to request records. They then
printed about 60 pages from their electronic record. Those pages were faxed to
our department. Our unit clerk scanned the printed pages from our fax machine
into our electronic record.

Some patient notes are a scan of a fax of a scan of a fax.

~~~
_pastel
This is a perfect explanation of why OCR of medical records is so difficult.

As an engineer working on this, it's frustrating that the computer vision
research community treats document OCR as a solved problem. New papers and
competitions are exclusively in fancy settings, like slanted text outdoors on
a busy street, or handwritten Urdu with only a small set of training labels.

Meanwhile our medical data is locked up in a scan of a fax of a scan of a fax,
with a mixture of printed text and handwritten notes, with table lines
crossing the text. Paid services like Google's Cloud Vision API struggle at
best, and the best available open source software (tesseract) isn't even
close.

------
nradov
From a purely technical standpoint the HL7 Continuity of Care Document (CCD)
is intended to address this issue by allowing a provider to put a summary of a
patient's entire chart (including a plan for future care) in a single XML file
and then give that to another provider when transferring care. It works well
when properly implemented, but unfortunately many healthcare providers haven't
done so completely yet. There are also practical problems in just moving the
file from one provider to another.

[http://www.hl7.org/implement/standards/product_brief.cfm?pro...](http://www.hl7.org/implement/standards/product_brief.cfm?product_id=408)

~~~
athenot
The CCD, though a standard, is far from a univeral bridge. You can represent
the same things in different ways, use different vocabularies. Even if you
standardize on the "blessed vocabularies" you still have many ways to code the
same thing.

So a CCD produced by Nextgen won't always come into Epic the way it's intended
(not picking on those 2, just an example).

I've come to realize that even though the CCD tries to be all things to all
people, it suffes from the same issue as many of the vocabularies themselves:
data precision is an afterthough. Clinical informatics lives in a utopia where
everything is precisely represented and perfectly documented. Actual clinicals
deal with partially-known information, imprecise or unrefined representation
of diagnosises, procedures, meds, etc; and just have to make the best with
what they have.

~~~
troyastorino
The problems with the CCD (having so many different ways to represent the same
thing, having a different flavor for each system) are unfortunately passed
down to new iterations of healthcare standards. New standards (like FHIR) are
designed to fix problems with older standards, but then when it comes to
implementation they are built to be backward compatible with the older
standards, and so inherit some of the same problems (in this case, the
ambiguity of representation).

~~~
nradov
HL7 FHIR makes implementation slightly easier, but it doesn't do anything to
solve the data modeling and coding problem. There are multiple ways to
represent the same patient chart entries in FHIR just as with HL7 CDA R2. Take
a look at the C-CDA on FHIR implementation guide.

[http://www.hl7.org/fhir/us/ccda/](http://www.hl7.org/fhir/us/ccda/)

Healthcare data is fundamentally complex. It is impossible to come up with a
single canonical way of representing everything we might want to record about
a patient. The standards reflect that essential complexity.

------
msamwald
I wonder if current attempts at EHR interoperability are a case of "the
perfect is the enemy of the good". Obviously the ideal solution would be one
where well-structured interoperable datasets are produced and shared. This
would enable very targeted analysis of patient data, and sophisticated
clinical decision support functionality. However, it seems like this is still
not happening, and the convoluted nature of many HL7 standards is certainly
not helping.

So I've come to think that it would actually be preferable to put most of the
health data into PDF-like documents, and focus on optimizing the accessibility
of the data through good full-text document search that can assemble an
overview by showing document snippets (i.e., allowing to get a broad cross-
document overview through document previews, rather than requiring opening
each document individually).

I guess some kind of especially important data, such as information on current
medication or drug intolerance should really be kept in a fully structured
format to enable clinical decision support, but for a lot of other
information, a light-weight system based on unstructured data combined with
good information retrieval tools would already improve on the status quo quite
significantly.

~~~
_corym
Health care is by nature very complicated and any attempt at standardization
is going to be sophisticated. Just look at how many ICD-10 codes there are.

HL7 is complicated but I see a lot of work being done to conform with the FHIR
standards. FHIR has only been around since 2014 and release 3 was only
completed last year. I do have hope for standards to take precedence in the
EHR realm but it will take time. Most EHR software was created in the late
80's and there's a lot of legacy code, client customization, and regulations
to go through in order to release this code. Healthcare doesn't leverage
itself to an agile "move fast and break things" ideology.

In addition the Commonwell alliance was supposed to help alleviate these
problems, but the fact that Epic didn't join really ruined things there.

~~~
msamwald
Yes, but FHIR was the result of many years that had previously been wasted
with HL7 v3, which was so convoluted that at some point some people in the
community gave up on it and came up with FHIR to get things done. The clock
did not start ticking in 2014. HL7 already wasted a lot of time and effort, to
the very real detriment of many patients around the world.

~~~
nradov
It's easy to criticize in hindsight but FHIR wouldn't have been possible
without the lessons learned from HL7 V3 so there was really no wasted time.
Sometimes the only way to learn is to make mistakes.

FHIR by itself is no panacea; it has some nice improvements, and makes
implementations significantly cheaper and more efficient but it doesn't enable
any fundamental new use cases. HL7 V3 standards such as CDA R2 are actively
used today to deliver patient care all over the world.

------
spalas
This article clearly describes the challenges we are trying to solve at
[https://picnichealth.com/](https://picnichealth.com/) (YC S14). Our goal is
to take the burden of compiling and maintaining a complete medical history off
of the patient while at the same time providing them with the utility of
having access to and the ability to seamlessly share their records with future
doctors.

Given the current state of EHR systems (and their lack of interoperability)
this often means dropping into the world of faxes and paper. To deal with this
we have built up systems for requesting, re-digitizing, structuring, and
validating medical records (in whatever format we receive them).

If you are interested in working with us to address these challenges, we are
hiring in a variety of roles:
[https://team.picnichealth.com/jobs](https://team.picnichealth.com/jobs)

~~~
troyastorino
Adding on as one of the PicnicHealth founders.

Unfortunately, the kind of experiences described are extremely common in
transfer-of-care settings. When we were starting PicnicHealth, my grandfather
was in-and-out of several different ICUs. Preventable mistakes when moving
between facilities and providers — inadvertently changed medication dosages,
missed therapy regimens, un-transferred test results — created health
emergencies that kept pushing him back further and further from recovery. He
ultimately passed away. We had these problems around information management
and transfer even though my dad (my grandfather's son) is a doctor, and was
continuously in touch with the different care teams. Without a central,
complete source of information, things will always get missed.

Patients and doctors deserve solutions to this problem today. Like the author
said, you can only piece together a patient's medical history if you're
willing to deal with records in any form, including faxing and scanning paper
and mailing CDs. It's hard, dirty work, but it's the only way to get
everything together. PicnicHealth does this so patients don't have to. And
gathering the records is actually just the first part —you need to structure
and normalize information in the different records so it's possible to do
things like view trends and use _control-find_.

Full electronic interoperability is slowly coming, but it's been slowly coming
for more than 20 years. I would be shocked if in 10 years faxes aren't still
being sent. We need to push to make interoperability happen as quickly as
possible, but in the meantime patients and their care can't wait.

------
howard941
My MD sold his practice and when I showed up at the vendee he told me not only
didn't he have the 4 inch thick plus paper-only but also that a) it wasn't yet
scanned and b) he wasn't even sure where the file, much less when the poor
assistant in the office was going to scan it.

------
nwhatt
This is heartbreaking. As someone at the core of the technology trying to
correct some of these problems, the biggest problem is the fragmentation of
the market.

This is the government certification data for inpatient software:
[https://dashboard.healthit.gov/quickstats/pages/2015-edition...](https://dashboard.healthit.gov/quickstats/pages/2015-edition-
market-readiness-hospitals-clinicians.php)

The long tail of software products makes connecting everything exponentially
harder.

------
anarbadalov
This is a revealing insider's look at what happens when medical records vanish
or are mishandled as patients move between physicians. It's also a heart-
wrenching story of one patient's journey -- one that should interest anyone
who has crossed paths with the American health care system. After all, if they
were a disease, medical errors would rank as the third leading cause of death
in the U.S., right behind heart disease and cancer.

~~~
someguydave
This is a great point. Medical researchers would do well to stop harassing
people about their lifestyle (it's not obvious much headway can be made there
anyway) and focus instead on the crazy number of deaths caused by interactions
with doctors and hospitals.

~~~
nradov
Medical researchers generally aren't harassing people about lifestyle issues.
The concerns over lifestyle come more from practicing physicians, politicians,
bureaucrats, employers, and economists. As a population we are increasingly
killing ourselves with overeating, substance abuse, and lack of physical
activity. Unless we can get a better handle on lifestyle issues then the
healthcare system is going to collapse and there won't be much that medical
researchers can do about it.

~~~
someguydave
Cool story bro. Show me the randomized lifestyle intervention trials that
actually improved mortality outcomes for heart disease, and I'll believe you.

~~~
nradov
You missed the point of my comment and seem to be trying to pick an argument
based on some preconceived notions. I made no claim as the effectiveness of
lifestyle interventions. I merely pointed out that poor lifestyle choices are
overwhelming our current healthcare financing system. This should be clear to
anyone who as looked at the data. If the current trend continues there simply
won't be enough money to pay for essential care any more regardless of who
does the paying. Therefore, if we can't improve the lifestyle issues there
will be serious consequences for the whole country including decreasing
lifespans, reduced economic competitiveness, and even impacts to national
security.

~~~
someguydave
You missed my point: claims like "I merely pointed out that poor lifestyle
choices are overwhelming our current healthcare financing system." are
empirical in nature and need empirical studies to demonstrate the truth of
them.

~~~
nradov
It's been studied _ad nauseum_. And please don't waste our time asking for
citations; there are a zillion peer reviewed articles which clearly
demonstrate that lifestyle factors have expensive health consequences and that
the situation is deteriorating. They're easy enough to find if you want to do
more than argue.

~~~
someguydave
Please cite a study of higher quality than this one, which found intensive
lifestyle intervention to be futile:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4339027/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4339027/)

~~~
nradov
I'm not sure why you persist in arguing against a point that I never made. It
is well known that the majority of cases of some of the most expensive
diseases such as type 2 diabetes or COPD are primarily caused by poor
lifestyle choices. Whether effective lifestyle interventions can be found is
an entirely separate issue.

