Monday, April 1, 2013

I don't know is not the same as none

I keep hearing that "There's no standards for that.", or that "There's too many optional features in that data element."  Sometimes these pronouncement come from people who should know better (at least by reputation, not necessarily according to knowledge or skill), and other times, it simply comes from folks who don't know that there are other places to look.

I think the main challenge is that so many folk looking for standards don't know what is there or where to look.  Organizations like HL7, IHE, IHTSDO, and LOINC that put forth such standards don't necessarily make them easily accessible in ways that implementers expect.

Clinicians and researchers are accustomed to looking up stuff in publication directories such as MedLine/PubMed.  Developers are accustomed to looking to publications from one or two (or maybe even three) SDOs or profiling organizations.

We can readily determine at a clinical level the appropriate treatment for a particular disease, or how to effectively use a particular medication, but have no similar resource to determine appropriate ways to communicate information about a particular disease or treatment to those who need to automate it.

USHIK is a good start for those of us working the US, but it doesn't really address the issue.  For example, what do you need to know about communicating an A1C result?
  1. What standard is used to order this test?
  2. What standard is used to communicate the results of this test?
  3. What standards are used to transport the information in steps 1 and 2?
  4. What code is or should be used to identify the result in step 2?
  5. How do we codify units?
  6. What other data need to be communicated to the lab to perform this test?
  7. How do we communicate the normal range for results?
  8. What information in the above is necessary to make determinations about quality of care related to this test?
  9. Among all variations in 1-7, how do we identify the right combinations that should be used for quality measurement?
I could answer the questions above, but I can tell you that there are likely to be eight or nine different publications that the implementers need to be aware of.  And none of these really address any of the clinical issues, just the technical issues with respect to the communication.


5 comments:

  1. Keith

    RE the whole standards arena, I think that another major problem faced by anyone who needs to identify and select a standard to use is the lack of clear, concise, comparative information aimed at doing just that - especially when two or more different standards are (or appear to be) "standardizing" the same thing.

    TJL

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    1. Yep. In research, there's supposed to be a place for analyzing what has been done in the past, but in standard development, there's never been a good place to put the results of that search (if it was ever performed).

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    2. Indeed, there is a well established tradition in many scientific fields of writing review articles that survey the state of the art, progress, and outstanding problems in a given area of research. An outstanding example of fairly recent origin is http://www.livingreviews.org.

      By analogy, it would great if this was done more systematically in technology and healthcare IT in particular: Take an application domain, look at what is being done in that domain—especially commercially—and what standards are being applied or not. Of particular interest are the areas where one or more standards seem to be applicable but are poorly implemented or completely neglected.

      When two or more different standards are (or appear to be) "standardizing" the same thing, it might be because somebody thought the developers of the "other" standard got it wrong, and it was necessary to more or less start over. If there are some disagreements of principle underlying the existence of these competing "standards" then the arguments should be at least laid out in public for everyone to consider.

      Of course, the two standards may be addressing different problems, but it isn't clear what the two problems are and how they differ. Again, a comparative review of these questions ought to exist.

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  2. Did this post get published before it was done? It looks like you started a new paragraph, and then just....stopped.

    Also the sentence in item 9 doesn't quite parse. There appears to be a missing word; see "that _ for quality measurement".

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    Replies
    1. I meant to delete the last paragraph. I was headed towards an answer of sorts, but the reality is I don't have an answer. And yes, I was trying to do two things at once.

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