The worst part of my job is dealing with the mess of document formats and coding systems in healthcare. The acronym soup is insane: HL7, CCD, CCR, CDA, Green CDA (which I just heard about from John Halamka’s blog but… no link!), and that’s just the document formats. Then there are coding systems like LOINC, SNOMED, SNOMED-CT, UMLS, ICD9, ICD10, RxNorm, … Interestingly enough, the issue is not how many there are. The issue is how they’re licensed. Here’s a screenshot from the HL7 website that should tickle your funny bone:
So, HL7 is unlocking the power of health information, and to do that they’re going to sell you a standard.
Meanwhile, the National Library of Medicine has toiled for years on the Unified Medical Language System (UMLS), which attempts to codify *everything* in medicine, from anatomy to viruses. It’s a pretty impressive piece of work. Conveniently, they provide a “meta-thesaurus” that maps other coding systems, like SNOMED, to UMLS. Brilliant! Awesome! Except… to use UMLS, you have to register. And you have to fill out a yearly survey. And you’re not allowed to redistribute the UMLS codes. Oh, and you have to sign a 10-page licensing agreement that explains how you can use UMLS, but you can only use SNOMED under these conditions, and this other coding system you can only use in these other conditions, and if you don’t have three lawyers and a few weeks on your hands, good luck answering this simple question: “can I use this in my open-source library and release it freely to the world?”
Imagine, for a second, if we had a similar situation without computers. Doctors would have to pay a fee to speak official medical terms when discussing your health. You would have to pay a fee to have those terms translated into plain English. Canon would have to pay a licensing fee before making fax machines able to send medical documents from one doctor to another. In short, every time a health transaction occurs using standardized language, there would be a tax.
This is insane. Folks in the health IT world are focused on much harder problems while ignoring this blatant ball-and-chain on innovation.
I submit that the quickest path to health-IT reform is the complete and unconditional freeing of these medical vocabularies and data formats. And I mean complete. No access fees, no yearly surveys, no constraint on redistribution, country of origin, commercial or non-commercial. Free. like HTTP and HTML. Like English. Like a patient-doctor conversation.
Take a precise example: my group at Children’s Hospital Boston just released Indivo X, the latest version of our Personally Controlled Health Record. It’s great, but there’s one key feature we had to strip out before shipping this free, open-source tool built using federal grant money: SNOMED codes. Sure, we’re a hospital with a license, we can use them internally. But we can’t redistribute them. So now, to install Indivo, instead of a 30-minute process, you need to go get a UMLS ID, wait 3 days for approval, then download the files, extract the codes we think are useful, and load them into the database. No exaggeration, you’ve now multiplied your time-to-working-install by 100.
This must change. Either the existing formats must be opened up, or new formats must emerge that do to the existing formats what HTTP and HTML did to Gopher: kill them with freedom. Taxing human interactions, simply because they’ve been digitized, is an unacceptable brake on innovation, and in a complex field like Health IT, it’s the last thing we need and the first thing we need to eliminate.