In NEJM: Protection or Harm? Suppressing Substance-Use Data

This post is jointly authored by Nicholas Bagley and Austin Frakt.

Yesterday evening, the New England Journal of Medicine released a Perspective piece that we co-authored on the recent suppression of Medicare and Medicaid data to researchers. (For our earlier coverage, see the posts collected here.) As we explain, the data suppression is both unnecessary and harmful:

What if it were impossible to closely study a disease affecting 1 in 11 Americans over 11 years of age—a disease that’s associated with more than 60,000 deaths in the United States each year, that tears families apart, and that costs society hundreds of billions of dollars? What if the affected population included vulnerable and underserved patients and those more likely than most Americans to have costly and deadly communicable diseases, including HIV–AIDS? What if we could not thoroughly evaluate policies designed to reduce costs or improve care for such patients?

These questions are not rhetorical. In an unannounced break with long-standing practice, the Centers for Medicare and Medicaid Services (CMS) began in late 2013 to withhold from research data sets any Medicare or Medicaid claim with a substance-use–disorder diagnosis or related procedure code. This move—the result of privacy-protection concerns—affects about 4.5% of inpatient Medicare claims and about 8% of inpatient Medicaid claims from key research files (see table), impeding a wide range of research evaluating policies and practices intended to improve care for patients with substance-use disorders.

The timing 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—we are flying blind.

While NEJM was preparing the piece for publication, ResDAC, released new Medicare data indicating that the suppression is even more extensive than we wrote. For 2013, Medicare suppressed 6.43% of all Medicare inpatient claims; for 2014, that figure rose to 6.8%. (The figures for Medicaid in our piece remain the same.)

Eric Goplerud, speaking to Alcohol and Drug Addiction Weekly in January, suggested that SAMHSA is planning on proposing a rule change this year that would allow CMS to restore access to the affected data. We hope so. The issue is much too urgent to ignore.

@afrakt & @nicholas_bagley

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