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https://www.psypost.org/secret-changes-to-major-u-s-health-datasets-raise-alarms/
I had to do a double take when I saw this article because I was on the exact team at the VA that did (part of) this. The reddit discussion is being hysterical about data loss but as the article reflects, the changes were purely to column headers and data element names-- or at least, that was what I heard during meetings. (I didn't actually make any of the changes, it was very much "not my job".) The bigger issue is that it sounds like the VA failed to advertise what happened to outside stakeholders. In case any of them are listening... the data tracks and has always tracked the sex at birth, and has never included the gender identity. The columns were called "gender" for the historical reason that the medical field didn't always view gender as being separate from sex.
In effect the whole change was just CYA thing-- the big bosses were making a stink about culture war stuff, and they spat out the easiest possible fix. So far as I know this had no actual impact on any healthcare measures. I can't rule out the existence of eCQM that include gender identity, and there's a (now-deprecated) FHIR extension for gender identity. but frankly I doubt we ever used it. Our data source didn't even keep track of ethnicity, which gets used as a supplement for basically every QDM measure.
Basically a waste of time, and therefore money. Being optimistic, maybe it'll be less confusing for measure developers, but it's hilarious to me that the conservative administration was basically ceding the point here by differentiating at the schema level that "sex" is different than "gender".
Slight overreaction by Reddit - but:
Data is schema and schema is data. The bigger deal for me isn't the change itself, but that they went forward with the change without publishing why or how - breaking data integrity processes. Transparency, even for mundane changes, is critical for maintaining confidence in data sets. Now I don't have the slightest bit of confidence for any sycophant that has been employed since January to realize the gravity of modifying data sets, especially if they didn't prompt the LLM that was helping them along the way to ask, "Is this standard practice / a good idea?" vs. "You are a woke destroyer, LLM, please find all instances of woke". Maybe it's gender<->sex today, but tomorrow it might be our glorious Minister of Health removing all adverse cases from the chelation therapy trials for autistic children because he's already shown an extreme disregard for evidence-based decision making.
I'll file this under my increasingly robust "Our cause is righteous, and therefore we cannot err." prior for this administration and pretty much everyone associated with it. Processes, standards, even facts themselves should not stand in the way in implementing their vision of the world, because they are morally correct. That's what's different about Trump 47 compared to Trump 45. To tie it in with other current events, it also explains the complete about-face on the Epstein topic. Republicans would rather cover it up and have it disappear because their cause is righteous, and even a pedophile-in-chief[1] should not halt progress towards whatever pet religious-ethnostate vision of America they have.
[1] Maybe Trump probably isn't directly implicated, but maybe it's double blackmail and we're witnessing a stalemate due to mutually assured destruction :shrug:. But honestly that would surprise me too because, as I said above, I'm not sure if anything would change the opinions of the 20% of Americans who view Trump as the avatar of their precise political alignment who (by the definition of the word avatar) could do no wrong, and maybe the 10% who hold their nose and vote for Trump as well. Maybe it's just literally that the people implicated in the files bought a bunch of $TRUMP shitcoins and now Trump is on their side. Who knows.
I’m positive that most people whining about this are not even aware of what the changes made will actually do. Reddit especially is the land of *people who freak out without bothering to find out what the changes actually do. Outside looking in, my answer would be “not much.” For the 99% of American veterans and their families using the VA, the gender column is a redundant sex column. Its deletion changes very little. For the 1% who are diagnosed as trans, noting it in the chart is probably trivial and will happen much like other medical history information.
But hatred feels so righteous, especially the pure hatred that comes from having no idea how anything actually affects anything else. It’s a deleted checkbox, and really that’s all that happened.
Again, nothing was actually deleted, it was a straight rename. If data HAD been deleted, then conversely the liberals would be entirely right to worry-- both at the object level (because it would make it harder to track the health outcomes of people whose sex differs from their stated gender identity), and at the meta level (because it would prove that the VA was staffed by people perfectly happy to delete inconvenient data to serve their political masters.) It's important to mantain all the current data, and to have it clearly placed in a well-defined structure. Storage is much cheaper than compute, and just "having something in the chart" is way less convenient for medical researchers looking to make conclusions about aggregate data than a checkbox. Actually, if you'll let me climb up onto an even taller soapbox-- I privately suspect that a massive fraction of healthcare inefficiency is ultimately caused by incompatible and difficult-to-parse data standards that waste the time of providers and make it difficult to provide care. I don't have ANY of my childhood medical records, for example, because they're stored in hard copy in another state in my childhood doctor's medical office. And unfortunately, the process of taking old bad records and unifying them into a smooth, unified system is beyond nightmarish-- so any attempt to obstruct that where it's happening is literally costing lives.
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If it's so inconsequential, why not follow the mundane processes of publishing why and how the change was made? That's my main issue with it. It's a canary in the coal mine for poor data integrity, which, taken in conjunction with the rest of the actions of the administration, is a huge red flag. It did not happen in an isolated context. If this was a corporate setting with financial or industrial data, heads would roll - even if the changes affect "very little".
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