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How Proprietary XML Standards May Threaten Your Health

14-Jan-07 07:52 pm EDT Leave a comment Go to comments

I recently had an opportunity extended to me by my doctor – an opportunity to create a medical records case management application.  Of course, this little project would require a degree of up-front research – was such a thing feasible.  And while the answer was ‘yes’ (as is often the case – the issue typically being not of doability as practicality), I made a disturbing discovery while determining whether there were standards for the storage of medical data and its sharing with other systems: that the emerging standards for medical records appear to be proprietary!

Link to Medical Society Leads the Way with Easy to Share Patient Records for Practitioners, from Microsoft – White Papers, Webcasts and Case Studies – TechRepublic

As the above TechRepublic article suggests, there are standards being embraced by some big players in the creation of medical software.  Indeed, there are a number of different standards types; some are for diagnostic (decision-making) purposes, others are more administrative, and still others are observational (for recording a patient’s condition and treatment over time).  And while I haven’t gone to the trouble of researching each of these standards completely, those that I did were either for sale outright or published in concert with payment of an association’s membership fees.

So, what evidence is there?  Well, let’s take one example…the Continuity of Care Record (CCR); an XML-based medical records standard, developed in concert with both IEEE membership and the W3C (according to articles matched in Google searches), which is administered by a body called the American Society for Testing and Materials (ASTM).  The ASTM’s standard is even cited, by convention in the XML document’s header tag as "<ContinuityOfCareRecord xmlns="urn:astm-org:CCR">".  (This is noteworthy in part because the urn element would normally simply cite the site where a copy of the schema could be obtained; something like "astm.org" instead of "astm-org".)  Thus, by design, the tag is not available from a recognizable Internet host and, presumably, is forever intended to be proprietary.

On top of all this, just try to download a copy of a CCR schema – and you’ve got trouble on your hands.  I did find evidence that there may have been a copy available for download at the CDC’s website, but the link to the .zip file containing the schema (among others) was removed.  Other than this one reference, I could find nowhere that the CCR schema was available for free download.  This, in effect, means one needs to visit the download page on the ASTM’s website and have one’s credit card ready to pay for the copy of either the documentation or its more useful "adjunct"; which is the schema in XSD form.

Now the fee for this one data type isn’t prohibitive – only $67 USD buys you your very own copy of the schema.  Of course…that’s your copy.  Not your customers’, not one you could publish to your website if you wanted to, and not one that you could add to or modify without ceding rights to those modifications automatically to ASTM.  (See license agreement for more info.)  My reading of this suggests that I might be able to use it as an embedded element in any software I write, but, then again, to verify this is the case I’d have to have legal counsel (more money).  And all this to be able to simply write code to read basic patient care data from a standard file.

So why does all this threaten your health?

Well, first and foremost – it simply impedes both the creation of software to manage patient records electronically.  If I as a developer have to pay all kinds of fees to get access to one standard record type or another (or, even worse – all kinds) then that cost is added to all the other various overhead involved in creating software; which is expensive enough just considering the time it takes to process all the requirements into a useful application medical professionals will buy.  Now, yes, those applications can be built without supporting XML standard documents, but wouldn’t it be a great feature to be able to share patient info with the hospital, the specialist, the lab; and all the others involved in the treatment process?

Second, as these standards develop or change (as they’re bound to for a variety of reasons I won’t and likely needn’t go into here), one needs to pay these fees again, and again.  So the cost of upgrading or developing the software again goes up.  Ultimately, these costs aren’t borne either by the standards body that imposes them nor even the software developer who makes it through the gate to start development of an application – it gets passed on to the buyer of the software.  This, in turn, means it’s blended into the overhead costs of managing patient records and thus patient treatment…which all means it’s eventually gonna make the price of health care to the patient go up.

And that, my friends, means that an artificial expense – imposed by a standards body in a world where standards are ordinarily not associated with fees of any kind – is being passed on to you, the unwitting consumer of medical care.

Third, the licensing model(s) these fees necessitate also are cause for concern since, according to the ASTM’s adjunct licensing appears to automatically assume ownership over any additions to specifications it administers.  For example, one problem with the current specs is an absence of security features.  Virtually no effort has been made to keep one’s private medical information private and, as such, it would benefit all for such  measures to be added by someone.  However, there’s now almost no incentive for a developer to contribute anything since it will become the property of the standards body, by license.  And this could be seen as threatening or at the very least impeding the development of privacy measures on a patient’s medical information.

The inability of the ASTM or any other organization to justify these fees is something that the government should really look into, but, I fear, the issue is so technically complex it will garner neither much media attention nor much attention from even the most dogged of consumer groups.  After all, how many people out there are even looking at getting into the field of writing medical case management software?  On the other hand, this does relate to a larger issue – one that involves the same standards bodies that brought us technologies like XML and HTML.  Up until now, I’d thought that XML standards would necessarily all be royalty-free because XML itself is royalty-free by definition (and one would think, surely, that implementing a particular XML schema wouldn’t change the basic requirement originally imposed by the W3C that XML be royalty-free).  One can’t patent or license it and, I’d thought, that derived technologies would be free from royalties too.

So, can/should/will the W3C or perhaps IEEE get involved at some stage when proprietary XML specs start popping up here and there?

I sure hope so…although someone out there would need to try and put the breaks on this and, so far, the W3C itself doesn’t seem inclined to do so.

More info to follow here as it’s acquired…

  1. 16-Jun-13 09:52 am EDT at 09:52 am EDT

    Hurrah, that’s what I was seeking for, what a data! present here at this web site, thanks admin of this web site.


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