In welcome news for researchers, Congress is considering a bill that would stop CMS from deleting claims pertaining to substance use disorders from Medicare and Medicaid data. But the bill isn’t perfect. Federal privacy rules don’t just apply to CMS. They also prevent private payers—think here of employers and insurers—from sharing their data. And the bill as written doesn’t fix that.
That’s a big problem for the all-payer claims databases that have now been established in about sixteen states. To improve transparency and foster research, these databases are tasked with collecting claims data from public and private payers alike. The idea is to give state officials and researchers a comprehensive picture of what’s going on in the state’s health-care system.
Taking their lead from CMS, private payers have begun withholding substance use data from these databases. The gaps in the data will impede the effectiveness of these new databases, a particular concern in those New England states that hope to use them to address the growing heroin epidemic.
Austin and I have also learned that high-profile researchers lucky enough to work with private claims data have encountered obstacles to getting their hands on substance use data. Want to find out whether privately insured people shop around when they get treated for substance use disorders? Whether they’re more price-sensitive than when they’re seeking other kinds of treatments? Or whether HIV-positive employees stop taking their medication when prices go up? Forget about it.
At the risk of pushing our luck, Austin and I wanted to offer some slightly amended statutory language that would more comprehensively fix the problem:
In applying this section and part 2 of title 42 of the Code of Federal Regulations, the Secretary shall, by July 1, 2016, establish rules and regulations that will allow “third party payers,” as such term is defined under such part, to disclose patient identifying information to qualified researchers, subject to the privacy restrictions governing the disclosure of such information established in §2.52 of such part. In carrying out the previous sentence, the Secretary shall also, by not later than July 1, 2016:
(1) establish rules and regulations enabling “third party payers” to share patient identifying information with federal and state officials for the purpose of creating and maintaining a database of health-care claims, and authorizing those state officials to share such data with qualified researchers, subject to the privacy restrictions under §2.52 of such part; and
(2) restore access to qualified researchers of patient identifying information held by the Centers for Medicare & Medicaid Services for the programs under titles XVIII and XIX of the Social Security Act.
If you’ve got suggestions for how to improve this language, let me know via twitter, email, or in the comments (which we’ll leave open for a week).