It happened. The data are collected by the Centers for Medicare and Medicaid Services. The mental illness – substance abuse.
The New England Journal of Medicine exposed these shenanigans and explained the consequences in an article published in April: Protection or Harm? Suppressing Substance-Use Data, by Austin B. Frakt and Nicholas Bagley. According to the authors, the CMS began to withhold from its data sets, called the Research Identifiable Files, any Medicare or Medicaid claim with a substance abuse diagnosis.
Why? Patient privacy concerns. Why didn’t the CMS tell researchers? Good question.
According to the article, CMS’s data-scrubbing began in late 2013 and affects about 4.5 percent of inpatient Medicare claims and about 8 percent of inpatient Medicaid claims. The redacted data allows researchers to hone in on different populations, age groups, regions and providers.
“The timing could not be worse,” the authors claim. “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 drug that disproportionately affects drug users – we are flying blind.”
Without data on these often underserved and vulnerable patients, researchers would not have been able to reveal that few elderly patients discharged after being treated for substance abuse received follow-up outpatient mental health care – and that those who did were less likely to die, according to the article.
The authors found one study that used the data to show to which veterans with substance abuse disorders relied on the Veteran’s Health Administration for care.
And then there are the Medicaid and Medicare patients with two diagnoses – such as Hepatitis C and substance abuse. How can any meaningful research be done on patients with a dual-diagnosis when one of the diagnosis is missing?
How are we going to figure out which health care policies and treatments work and don’t work without these data?
But there is one question the authors did not ask: Why single out substance abuse data? If the folks at CMS are so concerned about the privacy rights of patients, why not strip out data on other stigmatized illnesses, such as HIV?
Perhaps most important – why did CMS not tell researchers that they were stripping these data sets of these data? According to the authors, “no notice was given to the research community about the policy change. Most of our colleagues have been shocked to learn of it, many others probably remain unaware of the change.”
What does all this mean?
“Clearly, it is now infeasible to conduct any study of patients with substance use disorders based on Research Identifiable Files,” the authors conclude. “The results of many studies that have no apparent connection to substance use will be biased.
I am dual-diagnosed. I have alcoholism and bipolar II. I have friends in recovery who also have more than one diagnosis and receive care through Medicaid and Medicare. This hits home.
The government has – or should have – an interest in providing accurate data for research. Substance abuse costs taxpayers hundreds of millions of Medicaid and Medicare dollars. Then there are the collateral costs from prison stays, broken families and abused and neglected children.
We need to know what works in treating substance abuse. The government ought to know that by now.
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