If you don’t follow Arien Malec on Twitter, you should. He’s got strong opinions and an inside perspective on the real challenges associated with healthcare data interoperability.
As proof, check out the following Healthcare Standards tweetstorm he posted (removed from the tweet for easy reading):
1/ Reminder: #MU & CEHRT include standards for terminology, content, security & transport. Covers eRx, lab, Transitions of Care.
2/ If you think we “don’t have interop” b/c no standards name, wrong.
3/ Standards could be ineffective, may be wrong, may not be implemented in practice, or other elts. missing
4/ But these are *different* problems from “gov’t didn’t name standards” & fixes are different too.
5/ e.g., “providers don’t want 60p CCDA documents” – data should be structured & incorporated.
6/ #actually both (structured data w/terminology & incorporate) are required by MU/certification.
7/ “but they don’t work” — OK, why? & what’s the fix?
8/ “Government should have invested in making the standards better”
9/ #actually did. NLM invested in terminology. @ONC_HealthIT invested in CCDA & LRU projects w/ @HL7, etc.
10/ “government shouldn’t have named standards unless they were known to work” — would have led to 0 named
11/ None of this is to say we don’t have silos, impediments to #interoperability, etc.
12/ but you can’t fix the problem unless you understand it first.
13/ & “gov’t didn’t name standards” isn’t the problem.
14/ So describe the problems, let’s work on fixing them, & abandon magical thinking & 🦄. The End.
Here was my immediate response to the tweetstorm:
@amalec Seems like the real problem is the will to want to be interoperable. Where there's a will, there's an exchange.
— John Lynn (@techguy) May 10, 2016
I agree with much of what Arien says about their being standards and the government named the standards. That isn’t the reason that exchange of health information isn’t happening. As he says in his 3rd tweet above, the standards might not be effective, they may be implemented poorly, the standards might be missing elements, etc etc etc. However, you can’t say there wasn’t a standard and that the government didn’t choose a standard.
Can we just all be honest with ourselves and admit that many people in healthcare don’t want health data to be shared? If they did, we’d have solved this problem.
The good news is that there are some signs that this is changing. However, changing someone from not wanting to share data is a hard thing and usually happens in steps. You don’t just over night have a company or individual change their culture to one of open data sharing.