HIPAA is interfering with legitimate research goals
In an eye-catching study last week, Nobel Prize for Economics, for 2015, winner Angus Deaton and his co-author Anne Case found that deaths among middle-aged white men are spiking — and concluded that alcohol and substance abuse are at least partly to blame.
Rising morbidity and mortality in midlife among white and non-Hispanic Americans in the 21st century
The finding is "shocking," health care historian Paul Starr wrote at the American Prospect. "This midlife mortality reversal had no parallel in any other industrialized society or in other demographic groups in the United States."But here's an even bigger surprise: The federal agency that oversees the nation's largest trove of health data won't let researchers study the problem.
In an unusual move, the Centers for Medicare and Medicaid Services in 2013 began quietly deleting substance use disorder data from the files they share with researchers. Up until that point, CMS had freely allowed researchers to use the data to track health care procedures related to substance use across millions of patients.
We know substance abuse deaths are rising. But Medicare won't let researchers study the problem.
Given our results, and the great interest in what is happening, it is clear that the removal of those data is particularly ill-timed, although I am sure it was done for legitimate reasons," Deaton says. "There is an enormous amount of stigma associated with addiction, and perhaps [CMS officials] were concerned about that. I don't know. But it certainly makes it harder to dig down into a vitally important question of social and health policy."
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