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SNOMED: Privately owned public standard

In researching a story about how U.S. health care providers will be comingling the International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) insurance billing codes with the SNOMED CT (Systematized Nomenclature of Medicine — Clinical Terms) databases in time for the 2015 deadlines for meaningful use, I stumbled on a fascinating comment to a John Halamka blog post detailing the interactions of SNOMED and the Google Health personal health records repository.

Claudio Luís Vera, aka “modulist,” voiced his reasonable concern that SNOMED is owned by The International Health Terminology Standards Development Organization (IHTSDO).

“Even if SNOMED CT is the product of a nonprofit standards body,” modulist wrote, “it’s proprietary intellectual property. It should send up red flags to everyone that you need to secure permission to reprint the condition codes. It’s even more troublesome that there’s a future potential of having to pay royalties for public standards. That’s so wrong on so many levels.”

It’s true, IHTSDO owns the overall SNOMED and its U.S. subset, SNOMED CT. On the surface, modulist’s argument makes complete sense. But in another technology galaxy, something similar happened and everything turned out well for the public: Adobe Systems developed the PDF document file specification, and even though the company owned it for a decade and a half, it willingly shared it with anyone who wanted to download it. The PDF format was so free and open that over the years, hundreds of software developers created programs that created or interacted with PDF documents.

Now, almost 20 years later, PDF has become an electronic document standard. It was a de facto standard for many years until state, local and national governments around the world began mandating its use as the sole electronic document format they’d accept, sort of like how the U.S. government is mandating that physicians and hospitals use SNOMED in order to qualify their electronic health record (EHR) systems for meaningful use. Understanding that PDF was much bigger than Adobe, the company gave up ownership of PDF in 2007, turning it over to ISO.

 SNOMED is owned by a nonprofit organization. It costs money to develop products worth using. God bless the open source community — I myself own two computers loaded with Ubuntu Linux, and it’s one sweet experience to operate off the Bill Gates-Steve Jobs grid when possible — but in the end, someone’s got to pay the piper for continued development. In the case of Adobe, the privately developed public standard worked out well; it’s pretty clear that PDF’s worldwide adoption spread because of Adobe’s focus and benevolence in sharing the standard with would-be competitors and distributing Reader for free. People with opinions much like modulist’s predicted gloom and doom up until the day Adobe gave PDF to ISO.

In regards to SNOMED, the sky might eventually fall, and modulist’s fears might come true. But having personally watched PDF go from an obscure, proprietary thing no one knew about in the mid-1990s to seeing 20 PDFs in my — and everyone else’s — email every day in 2010, I have faith that if SNOMED turns out to be a true standard that effectively raises the quality of health care in this country through its use, the industry and government will work something out with IHTSDO to spread SNOMED far and wide. And they’ll make it free to those who need it most.

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