'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 pronouncements 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?
- What standard is used to order this test?
- What standard is used to communicate the results of this test?
- What standards are used to transport the information in steps 1 and 2?
- What code is or should be used to identify the result in step 2?
- How do we codify units?
- What other data need to be communicated to the lab to perform this test?
- How do we communicate the normal range for results?
- What information in the above is necessary to make determinations about quality of care related to this test?
- Among all variations in 1-7, how do we identify the right combinations that should be used for quality measurement?