The Centers for Medicare and Medicaid Services (CMS) announced the delay of the implementation of its restrictions on accessing Medicare and Medicaid data. Initially, the agency planned to start implementation in August 2024, regardless of public feedback. These restrictions would erect data access barriers, hinder research activities, and shield Medicare and Medicaid programs from public scrutiny. What prompted CMS to change course?
CMS apparently did not seek input from data users before announcing the restrictions on February 12th, causing an immediate revolt in the research community. Columbia University professor Adam Sacarny broke the news on social media, which was then picked up by Dan Diamond at the Washington Post the following day. On February 15th, hundreds of researchers signed a letter to CMS protesting the restrictions.
Subsequently, Christian Miller at ProPublica wrote a news story. STAT News, Briefing Book, and Forbes published opinion pieces by academics Rachel Werner (the University of Pennsylvania), Joshua Gottlieb (the University of Chicago), Kevin Rinz (the U.S. Census Bureau), and myself (Johns Hopkins University). Michael Cannon from the CATO Institute also wrote an article to lend support. Meanwhile, the research community ran a grassroots campaign through both public discourse and engagements with the agency and lawmakers behind the scenes.
The climax occurred on March 15th during a U.S. Senate Finance Committee hearing. Senator Bill Cassidy (R-LA) questioned Health and Human Services Secretary Xavier Becerra on CMS’s actions and requested changes. Senator Cassidy, a physician and senior Republican leader, wields substantial power in healthcare policy. Soon after his intervention, CMS announced the delay of implementation and its willingness to “carefully consider and be responsive to comments and concerns.”
While it remains unclear what CMS will ultimately do, lessons should be learned from this battle for data access and government program accountability. It’s important not only for researchers but also for all stakeholders in U.S. healthcare, which is heavily shaped by government policies.
First, individuals making decisions in government agencies do not possess perfect knowledge of the consequences of their decisions, which can cause far more harm than intended benefits to the public. While government workers should recognize their limitations, it’s up to the public to proactively express concerns and debate the optimal option.
Second, the self-interest of individuals making agency decisions is often not well aligned with the interests of stakeholders affected by those decisions, such as in the case of COVID-19 “free” tests. Just as the public demands stakeholders’ monitoring of decisionmakers in corporate America (referred to as “governance” in environmental, social, and governance or ESG), we should also be vigilant about misaligned incentives and strengthen public monitoring of government agencies.
Third, where there’s political will, there’s a political way, even without lobbying dollars. Political will without orchestrated financial support can still overpower deep-pocketed special interest groups. Washington, D.C. operates around not only money, but also public sentiment.
Government agencies are run by human beings with flaws, just like all of us. They are not run by perfect but non-existent individuals with superior knowledge and incentives perfectly aligned with the public interest. The curiosity and desire to seek truth are as formidable among researchers as the aspiration to innovate and improve humanity among all Americans. This force is the ultimate driver of our economy and prosperity. It also fosters the political will not to be conquered.
