Researchers call for U.S. to end addiction-data blackout

Researchers are urging officials at federal health agencies to restore their access to data sets pertaining to addiction. Medicare and Medicaid claims relating to substance abuse disorders have been removed because of privacy concerns.

Medicare and Medicaid data is often the biggest and only really comprehensive source of information researchers have when it comes to national health issues.

But in 2013,  millions of claims relating to addiction were scrubbed from data sets by the Centers for Medicare and Medicaid Service due to privacy concerns. Access to data was removed at the urging of the Substance Abuse and Mental Health Services Administration.

Apparently, the data sets were not supposed to be available to researchers in the first place. Laws enacted in the 1970s and updated in the 1980s prevent access to data pertaining to addiction to protect people’s privacy.

Despite these rules, researchers say they had full access to data until 2013, and that they were not told about the changes in protocol. Nicholas Bagley of the University of Michigan Law School said it’s a big blow to research work.

“When we’ve got a huge problem on our hands with opioid abuse, now is not the time to go dark on important data on how we might tackle that really difficult problem,” he said.

Billions of claims are affected annually by the data blackout, said Bagley, adding that also skews research in other areas.

“If you go to the hospital and you have a substance use disorder, you no longer appear in the data, if you go to the hospital and you have a primary diagnosis of a broken leg, but you also have a secondary diagnosis of alcoholism you also disappear from the data sets,” he explained.

Not being able to access addiction data is also making it impossible to study the impact of the Affordable Care Act on this issue, said Mady Chalk, director of the Policy Center at Treatment Research Institute in Philadelphia.

“There is an expectation that as more people get insured, that more people will use services for addiction,” she explained. “We’d like to know what is happening, but much of that can’t be done without the kind of data that has been removed, and cannot be released.”

Privacy concerns are real, Chalk said, but there should be a way to release the data without putting personal information at risk.

Officials at the Substance Abuse and Mental Health Services Administration say they are reviewing the practice of removing the data sets, and are considering restoring access.