Thomas Lord wrote:
Mitch Amiano wrote:
There exists a general market <snip/>
http://xml.coverpages.org/healthcare.html shows a plethora of
activity in this area.
I agree about that market and thank you for the link to what looks a
useful resource.
The value to the user, if I can read into Thomas' response, is the
ability to use the system to query and retrieve on the basis of the
structures, not just to store and seal it.
That's an example of a benefit to the user. Other benefits of an
XML-based format include: exchange formats "for free", directly
executable data type (aka schema) definitions (also in XML), generic
stores and processors, etc. I realize that that list starts to sound
more like "benefits to the programmer" rather than "benefits to the
user" so, another way to say it is that XML-based approaches give
customers a lot of liberty to invent new database structures because,
from just a definition of the new structure, the customer can get a
working database, working exchange format, and to some extent a
working UI pretty much "for free".
The medical record standardization efforts you link to above are a
good example: domain experts in medicine concentrate on applying
their knowledge to things like translating a paper Continuity of Care
form into an XML type. Increasingly, we should expect the results
of such efforts to be more and more "directly executable" -- those
guys are doing the heavy lifting of writing entirely new applications.
OTOH, I would suggest to anyone initiating a project such as was
suggested, be extremely disciplined and NOT be distracted by the
plethora of XML efforts. Choose a path and go down it, with a specific
set of users in mind, possibly even using your own "non-standard" tag
set. Trying to be compliant with everything, nothing will be completing
or it will be so convoluted it is incomprehensible.
An appealing aspect of the DITA XML methodology with respect to the
problem of bridging to different XML tag sets, above-and-beyond using
one-of XSLT transforms, is the ability to cross-translate DITA documents
between domain-specific DITA tags and the more generic Topic types. It
is inheritance: "Topic" in DITA is as "Object" is to Smalltalk. The
exiting DITA-Open Toolkit transformations are keyed off of a kind of
"base-class/instance-of" attribute built-into the stock schemas and
modified in schemas used for specializations.
Doesn't a HIPAA compliant system also have to restrict access on the
basis of roles and privileges? So you'll need some sort of access
control lists or other security controls to even get in the door.
It's even worse than that. To really get anywhere you not only
access controls based on roles and privileges, but you need to
innovate a little bit about how to implement those. The problem is
that, as an industry, health care needs to learn to maintain widely
distributed, portable records. Yet, during transport from one
end-use to another, we should expect this data to pass through plenty
of untrusted processes. Therefore, I predict (not very boldly --
it's obvious), that standards for encrypting XML content, standards
for signing XML content, standards for distributed management of
"identity", and standards for managing public cryptography keys are
going to become very important in the near future.
A few months ago, I applied to NCSU, and was told that I had to be
immunized. Well, I was, but long story short my records consisted of the
doctor scribbling a note on a prescription pad - and it didn't meet the
criteria. So I'm getting shots in my arms, and cursing the doctor, who
has long since passed on. In any case, I'd add to the above, that I
could have trivially forged a document that would have looked perfectly
valid - the doctor, after all, is dead, his office and records gone. So
(a) society is expecting a far higher standard of proof regarding
digital content than what one could possibly expect from a paper trail
and (b) it was primarily my interest that was harmed through the lack of
thoroughness and diligence regarding records management.
They are my records, and while I shouldn't be allowed to falsify someone
else's entries, or muck with some other's version of the same records,
by the same token I should have complete access to the content as it
pertains to me. From that aspect, I think Arch philosophically is
appealing.
One last comment - where's the money for it going to come from?
Are you asking me or Patrick?
Definitely posing that question to Patrick. I recognize from listening
in on the Arch list that you've been through the wringer financially
while working on Arch.
I'm playing Devil's advocate rather than looking at it as the techie I
am at heart. Regardless of how many neat open source projects that
could be leveraged to address one aspect or another of medical records
management, it still costs people time, effort, and resources to attempt
such an endeavor. People have to eat; better still if they can pay their
own medical expenses too, and have something left over. I'm not a big
mover and shaker, but I would think it would be best to identify one
aspect or two of the problem that is REALLY PAINFUL to someone with
money, so that you can get them to start transferring capital to you in
exchange for addressing their perception of the pain.
Another way to put it: Patrick, are you viewing this as an "internal" IT
problem, or have you considered the problem/solution in terms of a
business model? Doubtless there is a market for medical records
management for doctor's practices, clinics and hospitals. What about for
the client or families? It would have been worth about a hundred bucks
to me in the case I outlined above, to get a valid immunization record
and avoid the hassle of being poked with a needle. (Perhaps it's about
time someone created a medical records "credit union" as it were, and
separate the ownership of the records from the institutions.)
Health records are not my primary focus -- I'm aiming for a bigger
target with health records as a potentially tasty application. I'm
doing "lower level" work that "enables" stuff like health record
applications.
My plan, such as it is, is to try to make money "on the margins" of a
distributed, anarchic build-out of an important new open source
technology. Right now, the work I'm doing is an investment being
made by fiance and I -- I leverage some of this work for my part-time
day job and we invest some of our household income in my spending
plenty of additional time on this "practical research". I think that
when I "release early" the open source results, astute people in the
open source community will likely want to use the code, probably fork
it and improve it on their own, turn into direct-to-customer products
of their own, etc. By making money "on the margins" I mean that I
intend to charge small amounts for the download of some (GPLv3)
components, charge for documentation downloads, charge for a la carte
consultations, etc. That's chump change per transaction but, for a
family business, chump change can quickly add up. Of course, I'll
also keep my eyes open for unique direct-to-customer niches that, by
luck, I'm the best positioned to pounce on, build some equity, sell a
company (or just operate one), and "win big".
This being open source, the "big" investment building out this new
technology is likely to occur (if it does at all, knock on wood), in a
distributed, incremental way. My job as an open source researcher
is basically just to create the "frame" -- to create the new market
for that incremental, distributed investment by "shaping" the
technology the right way.
-t
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