An update on CMS’s data withholding

I’ve received a lot of questions about CMS’s deletion of substance use disorder related claims from research Medicare and Medicaid files, which seems to have been done without public discussion.

My fellow research colleagues from around the country are, rightfully, upset by this and want to know more. Why are the claims being removed? Who is benefiting or being protected by this? Which, specific claims are removed? Why was there no public process? Why isn’t there more information online? AUSTIN WHEN ARE YOU GOING TO GIVE US THE DETAILS!!!!???

The fact is, nobody I have contacted (and I have contacted many) seems to know anything more than I’ve posted, or has been willing to tell me (so far) if they do know. I am working all channels and leads available to me. Even people I thought would know about this didn’t.

I can only add two things, both meta:

  1. It’s very unusual for me to post a weedy/wonky/technical issue on this blog and not get answers, good ones. TIE, it seems, has deep and wide reach in the research and health policy communities. Based on that, my best assumption is that people who do know something about these data withholding issues know we’re seeking answers. Somebody reading these words somewhere knows something. Feel free to tell me! (Or, why can’t you?)
  2. The fact that this issue was not known to many researchers, and that details are this hard to tease out about a problem this important to research is why the community needs a space like this. I’m happy for TIE to serve as an alert system. I’m sounding the alarm here. Contact anyone you can think of who might know or know someone who knows about CMS data access decisions. Let me know what you find out. (If it must be off the record, so be it … but I gotta ask why that would be?)

Lastly, watch this blog and/or Twitter. I will update as information becomes available.


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