Re: EMR EBM EBMgmt

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
>
>
>