Several of our members—among them Dr. Austin Frakt, health services researcher, cofounder of the The Incidental Economist (TIE) and a frequent blogger here —have alerted us to some troubling developments related to data access. Word is that the Centers for Medicare and Medicaid Services (CMS) has been directed by the Substance Abuse and Mental Health Services Administration (SAMHSA) to henceforth exclude identifiable data on claims related to substance use disorder diagnoses and treatments from its Medicare and Medicaid datasets.
Needless to say, this is a huge blow for behavioral health services research and health services research in general, as well as the providers and patients who need evidence on what treatments work best, for whom, and in what circumstances. You can find extensive chronicling of the developments from Austin and University of Michigan health law professor Nicholas Bagley , and more on the dire implications for researchers, providers, and patients via TIE here.
In direct response to Austin’s and Nicholas’s persistent (near daily) coverage of this evolving issue, SAMHSA issued an official response to TIE, explaining its decision to direct CMS to now withhold these previously available, identifiable substance abuse data. The decision is rooted in what SAMHSA views as the letter of federal law (42 USC 290dd-2) and the implementing regulation (42 CFR Part 2 (Part 2), which guarantee the confidentiality of patient records of individuals receiving substance abuse treatment services from federally assisted alcohol and drug abuse programs.
As Nicholas notes in his blog post, it seems that “SAMHSA’s position jibes with the text of the rules but is at odds with the spirit in which they were adopted.”
SAMHSA notes that they are, in consultation with CMS and other HHS agencies, “examining ways in which Part 2 may be updated in accordance with SAMHSA’s statutory authority.” That’s the good news. The bad news is that any change in the regulation will take some time, assuming SAMHSA has the legal authority to do it. If it’s determined that they don’t, new legislation granting such authority would be needed. Either way, we don’t see an easy (or fast) fix to help regain access to these data.
AcademyHealth has alerted our advocacy partners in the behavioral sciences and treatment communities, and we will continue to collaborate with them on a coordinated advocacy strategy. In the meantime, we welcome and need your input!
Please share stories of research findings and evidence-based, improvements in care that would not have been possible, or will not be possible in the future, without these identifiable data at advocacy@academyhealth.org! We will use these examples as we make a compelling case to the administration and other policymakers for these data’s release.