CMS’s statement about data withholding

Aaron Albright, Director, Media Relations Group, Centers for Medicare and Medicaid Services wrote me,

CMS is committed to supporting research use of CMS data while ensuring that patient-information is properly protected. Alcohol or drug abuse treatment information from limited data set files or our public use files are currently available to the public and researchers since neither of these contain personally identifiable protected health information.

CMS is not permitted to disclose or allow the use of patient identifying information on alcohol or drug abuse patients for research purposes without patient consent under regulations from the Substance Abuse and Mental Health Services Administration (42 CFR Part 2). Historically, CMS research files have not contained any patient identifying any information (e.g., name, address, social security number) and as a result, CMS did not redact information on drug or alcohol abuse treatments. More recently, researchers have started requesting patient-identifiable information to support linkages with other data sources. As the number of external data resources that could be used to re-identify a patient has grown, this has created concerns that CMS research data files could be used to identify a patient receiving treatment for alcohol or drug abuse. As a result, CMS received guidance from SAMSHA in 2013 that the agency should not release research data files that contain information on alcohol or drug abuse treatment without patient consent.

Interpretation of 42 CFR Part 2 seems to be the key here. I read it clearly as authorizing disclosure of identifiable data for research. There’s even a section that says so. One cannot link claims to VA or DoD administrative data or other person-level data without it, which is a big deal for some applications.

Moreover, my colleagues are telling me that it isn’t just identifiable data they can’t get, but any substance use related claims, even de-identified. That’s an even bigger deal.

Prior posts on this issue are here.

@afrakt (via phone)

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