The Centers for Medicare and Medicaid Services (CMS) announced a delay in implementing restrictions on access to Medicare and Medicaid data. Initially, the agency planned to begin implementation in August 2024, regardless of public input. These restrictions erect barriers to data access, impede research efforts, and shield Medicare and Medicaid programs from public scrutiny. What prompted CMS to change direction?
CMS apparently did not seek input from data users before announcing the restrictions on February 12th.th, sparking an immediate uprising in the research community.Professor at Columbia University adam sakany The news broke on social media and was picked up the next day by Dan Diamond of the Washington Post. February 15ththhundreds of researchers signed a letter to CMS protesting the restrictions.
Then ProPublica's Christian Miller wrote a news article. STAT News, Briefing Book, and Forbes published opinion pieces by scholars Rachel Werner (University of Pennsylvania), Joshua Gottlieb (University of Chicago), Kevin Rinz (U.S. Census Bureau), and myself (Johns Hopkins University). Michael Cannon of the CATO Institute also wrote an article offering assistance. Meanwhile, the research community developed a grassroots movement, both through public debate and behind-the-scenes engagement with government agencies and legislators.
The climax occurred on March 15th.th At a U.S. Senate Finance Committee hearing. Sen. Bill Cassidy (R-Louisiana) questioned Health and Human Services Secretary Xavier Becerra about CMS' actions and called for changes. Senator Cassidy is a physician and Republican official who holds significant power in health care policy. Shortly after his intervention, CMS announced a delay in implementation and its intention to “carefully consider and respond to comments and concerns.”
What CMS will ultimately do remains to be seen, but lessons should be learned from this battle over data access and accountability in government programs. This is important not only for researchers but also for everyone involved in U.S. health care, which is largely influenced by government policy.
First, individuals making decisions in government agencies do not have complete knowledge of the consequences of their decisions and can cause far more harm to the public than the intended benefits. . Government officials should be aware of their limitations, but it is up to the public to actively voice their concerns and discuss the best options.
Second, the interests of the individuals making agency decisions often do not align well with the interests of the stakeholders affected by those decisions, as in the case of “free” testing for COVID-19. Just as the public demands stakeholder oversight of American corporate decision-makers (termed “governance” in Environmental, Social, and Governance, or ESG), so too should we be wary of disproportionate incentives. However, there is a need to strengthen public scrutiny of government institutions.
Third, if there is political will, there is a political way, even without lobbying money. Without organized financial support, political will could still overwhelm the deep-pocketed special interests. Washington, D.C., is run not just on money, but also on public sentiment.
Government agencies are run by flawed human beings, just like all of us. They are run by perfect but non-existent individuals with superior knowledge and incentives that are perfectly aligned with the public interest. Curiosity and the desire to search for truth are as formidable among researchers as the desire for innovation and improvement of humanity among Americans as a whole. This force is the ultimate engine of our economy and prosperity. It also fosters unconquered political will.