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NEJM Perspective: Withholding CMS Data Related to Substance Use Disorder and Its Impact on Research

April 16, 2015

A Perspective in the April 15 issue of The New England Journal of Medicine discusses the withholding of Centers for Medicare and Medicaid Services (CMS) data regarding substance use disorder. Substance use disorder (SUD) affects 1 in 11 Americans over 11 years of age and is associated with more than 60,000 deaths in the United States each year. Yet in November 2013, the CMS began to withhold from research data sets any Medicare or Medicaid claim with an SUD diagnosis or related procedure code. This move—the result of privacy-protection regulations overseen by the Substance Abuse and Mental Health Services Administration (SAMHSA)—affects about 4.5% of inpatient Medicare claims [recent research suggests this figure is closer to 7%] and about 8% of inpatient Medicaid claims from key research files, impeding a wide range of research evaluating policies and practices intended to improve care for patients with substance use disorders. As a consequence, VA researchers cannot see the full utilization of Veterans who also use Medicare-or Medicaid-financed healthcare. The timing for the withholding of SUD-related data could not be worse. Just as states and federal agencies are implementing policies to address epidemic opioid abuse and coincident with the arrival of new and costly drugs for hepatitis C—a disease that disproportionately affects drug users—researchers are flying blind.

Authored by HSR&D investigator Austin Frakt, PhD, and Nicolas Bagley, JD, this NEJM Perspective summarizes the problem, quantifies it, describes how it arose, and argues that research access to such data should be restored.

Frakt A and Bagley N. Protection or harm? Suppressing substance-use data. Perspective in The New England Journal of Medicine. April 15, 2015;