Could Congress restore access to Medicare and Medicaid data?

In Austin’s and my ongoing crusade to restore researchers’ access to substance-use data from Medicare and Medicaid, we’ve pinned our hopes on the Substance Abuse and Mental Health Services Agency (SAMHSA). A modest change to the agency’s regulations is all it would take to assure that the researchers who study addiction, Hep C, and HIV-AIDS, among many other conditions, get the data they need to improve treatment options and save lives.

But there’s another potential solution. Congress could fix the problem itself, without SAMHSA’s involvement. The approach holds some appeal. It would bypass the bureaucratic dithering that seems to be holding SAMHSA up. As important, it would also prevent the agency from pulling the same stunt in the future.

It wouldn’t take much to fix the problem. I’ve pulled together some statutory language that I think would do the trick. (Drop me a line if I’m overlooking something. Comments on this post are open for one week.)

Restoring Research Access to Medicare and Medicaid Data

(a)  The Secretary of Health and Human Services shall be considered a “program director,” not a “third party payer,” within the meaning of 42 C.F.R. Part 2 for purposes of disclosing patient identifying information to qualified researchers.

(b)  The Secretary shall, by January 1, 2016, restore research access to patient identifying information held by the Medicare and Medicaid programs, subject to privacy restrictions in 42 C.F.R. Part 2.

Now, Congress won’t adopt this draft language as a stand-alone law: as important as it is to share unbiased Medicare and Medicaid data, there’s not a big enough constituency pushing for the reversal of SAMHSA’s decision.

But if the language could be inserted into a bigger bill, we might be cooking with gas. Representative Tim Murphy, for example, has proposed the Helping Families in Mental Health Crisis Act, which includes a provision that would allow accountable care organizations and health information exchanges to freely share substance-use data to improve the quality of care. The language I’ve proposed would be a natural fit for the act.

In the current political climate, I’ll admit that I’m not optimistic about a congressional fix. But restoring access to critical data isn’t a partisan issue; indeed, it shouldn’t even be controversial. Maybe it’s too soon to count Congress out.


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