“You can’t manage what you can’t measure” is an aphorism frequently applied to managing companies, but it applies equally to complex government programs like Medicaid. The federal/​state initiative reimburses medical services provided to over 80 million beneficiaries in multiple categories using a variety of service delivery mechanisms. Assessing federal and state Medicaid policies is complicated by the unavailability of comprehensive, public data.

The Centers for Medicare and Medicaid Services (CMS), a unit of the federal Department of Health and Human Services, has a large trove of Medicaid payment data that could be quite helpful for policy analysis. This data resides in CMS’s Transformed Medicaid Statistical Information System (T‑MSIS).

Unfortunately, this data set is not made available to the public. Instead, interested users must purchase it at costs ranging into the tens of thousands of dollars and obtain approval from an Institutional Review Board (IRB). An IRB is a body (typically at an academic institution) that reviews research protocols to ensure that human subjects are not mistreated.

These barriers effectively limited access to detailed Medicaid data to government researchers, a few academics, and large non-governmental research organizations like the Urban Institute and the Kaiser Family Foundation. Taxpayer advocates and good-government watchdog organizations are effectively barred from obtaining this data, even though analyzing the files could well yield findings of waste and ideas for greater efficiency.

While researching our Cato Policy Analysis, Containing Medicaid Costs at the State Level, my colleague Krit Chanwong and I came across a report by the HHS Office of Inspector General (OIG) that relied on T‑MSIS data. Cato filed a Freedom of Information Act (FOIA) request with HHS asking for the T‑MSIS data that OIG analyzed.

Unfortunately, HHS allowed seven months to pass without responding to Cato’s FOIA request despite the fact that federal law mandates a response within twenty business days consequently. Cato has decided to file suit in the Federal District Court of the District of Columbia.

The suit, which can be tracked on CourtListener, is entitled Cato Institute v. Department of Health and Human Services, case number 1:24-cv-00719. Cato is asking the court to declare HHS in violation of federal FOIA Law, order HHS to search for the data and release it (unless it is covered by a FOIA exemption), and to pay court costs.

Hopefully, the act of defending the case will compel HHS to revisit its stance on T‑MSIS data. It should be freely available to any organization that has the capacity to process and analyze very large datasets.