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Three years ago, and without notice, data about patients with substance use disorders began to disappear from Medicare and Medicaid files widely used in health services research. Because researchers had been afforded access to those data for decades, the change was mystifying. Friends of the show Austin Frakt and Nicholas Bagley raised an alarm, and they began to look into it.

And things happened! What we do makes a difference. This is Healthcare Triage News.


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Three years ago and without notice, data about patients with substance use disorders began to disappear from Medicare and Medicaid files widely used in health services research. Because researchers had been afforded access to these data for decades, they change was mystifying.

Friends of the show, Austin Frakt and Nicholas Bagley, raised an alarm, and they began to look into it. And, things happened! What we do makes a difference. This is Healthcare Triage News.

[Intro]

Special thanks to Nick Bagley, whose blog post this episode was adapted.

The culprit for all of this was a 1976 regulation governing the privacy of information pertaining to substance use disorders. On its face, the regulation, which was drafted well before electronic records came into common use, seemed to prohibit the Centers for Medicare and Medicaid Services (or CMS) from sharing such information with researchers. No one apparently noticed until 2013, at which point CMS started scrubbing its data.

This was a calamity for health services research. The data scrubbing made it impossible to use Medicare and Medicaid records to study efforts to combat addiction and the consequences of substance use.

Beyond that, the non-random withholding of data would predictably skew research into any condition that was more common among people with substance use disorders, a point elegantly confirmed by a research team from Brigham & Women's Hospital in Boston.

Over on our blog, and in the pages of The New England Journal of Medicine, and The New York Times, Nick and Austin exhorted the Substance Abuse and Mental Health Services Agency, otherwise known as SAMHSA, to revisit the 1976 rule. Last February, SAMHSA agreed to do so, issuing a proposed rule to end the data scrubbing. Everyone crossed their fingers and waited.

The wait was rewarded a couple of weeks ago with the release of a final ruling that closely tracks the original proposal. Under the rule, CMS is free to share addiction-related records with researchers who secure Institutional Review Board (or IRB) approval and agree to appropriate safeguards- standard procedure for receipt and use of all identifiable CMS research data.

In considering the comments it received, the agency took real pains to enable research into addiction and correlated conditions, pointedly rejecting input that would have imposed needless burdens. In short, the rule is excellent. SAMHSA should be commended.

There is still a shadow here, however. Because the rule doesn't take immediate effect, the incoming presidential administration can still withdraw it, and President Trump will almost certainly impose a moratorium on any Obama-era regulations to allow his administration to review them.

That doesn't mean the rule is dead. Given the new president's expressed interest in curtailing the opioid epidemic, we might be cautiously optimistic that the rule will eventually go through. But, nothing is certain. The fight isn't over quite yet.

[Outro]

Healthcare Triage is supported in part by viewers like you through Patreon.com, a service that allows you to support the show through a monthly donation. Your support makes this show bigger and better. We'd especially like to thank our research associate, Joe Sevits, and thank our surgeon admiral, Sam. More information can be found at Patreon.com/HealthcareTriage.