In an eye-catching study last week, Nobel Prize 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.
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.
So why start suppressing the data? After researchers Austin Frakt and Nicholas Bagley broke the story, CMS said it was a matter of patient privacy and, citing a long-overlooked 1987 rule, concluded that researchers needed to start obtaining individual consent.
It's hard to underscore how big a change this was at the time. First, it's impractical for researchers to get individual consent for millions of records. Second, it was a reversal of how Medicare and Medicaid health care claims data had been used for decades.
Frakt and Bagley have spent months using their not-insignificant platforms at the New York Times and New England Journal of Medicine to advocate for a fix. Bagley even took a crack at writing a statute that Congress could just drop into a bigger bill.
But so far nothing has changed. The Substance Abuse and Mental Health Services Administration had signaled they were on the verge of releasing a proposed rule change — months ago. (And even if SAMHSA does end up proposing its fix, the slow workings of government mean that it's going to be very long time before it's turned into a reality.)
Meanwhile, that's presented multiple problems that should concern all of us.
First, there's the issue of wanting to follow up on the Deaton and Case findings — to understand the significance of substance abuse in America's health care system and spot trends over time.
But to really dig into the data, "it's important to look at age groups far more refined than the broad categories they originally investigated," Frakt told me. "[And] the kinds of Medicare and Medicaid files you'd need to do that are exactly the ones with missing substance use–related claims data."
Second, there's the sheer challenge of bias: Researchers are getting skewed data sets, given that CMS is deleting substance use claims. Frakt and Bagley conclude that up to 8 percent of inpatient hospital medical records are currently being suppressed, in addition to data on outpatient and nursing home care. "The systematic removal of this much data can lay waste to a significant segment of research," Frakt wrote earlier this year.
Finally, there's a real, building cost to patients. In one possible scenario, researchers could use this missing data to flag that certain patients are more likely to present to the emergency room with drug overdoses; the findings of that research could inform hospitals' strategies. But without data to know that, it's much harder to institute quality improvement strategies.
More researchers are starting to call on CMS officials to change their mind. In a PNAS commentary posted on Monday, Dartmouth's Jonathan Skinner and Ellen Meara conclude that deleting Medicare and Medicaid data has willfully limited our nation's ability to fight an emerging public health crisis.
"It's a serious problem," Skinner told me. "Just as we begin to understand the severity of drug and alcohol abuse, CMS rules make it impossible to track trends or to better understand fundamental causes."
"It isn't just drug overdose that is affected," Meara added. "Because diagnoses of substance use disorders are common among individuals with depression, many records of treatment for depression are missing when substance use disorder data are suppressed. This makes it impossible to track depression and its treatment over time."
And Deaton and Case — who know the stakes better than anyone — agree that this is an issue.
"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."