The Centers for Medicare and Medicaid Services (CMS) initially planned to implement restrictions on accessing Medicare and Medicaid data in August 2024, without seeking input from data users. This decision was met with strong opposition from the research community, led by Columbia University professor Adam Sacarny, who broke the news on social media. This sparked a series of protests, including a letter signed by hundreds of researchers and articles by academics and experts in various publications.
The backlash continued to grow, with journalists like Christian Miller at ProPublica and opinion pieces by academics appearing in STAT News, Briefing Book, and Forbes. Michael Cannon from the CATO Institute also wrote an article in support of maintaining access to the data. The research community engaged in a grassroots campaign to raise awareness and push back against the restrictions, both publicly and behind the scenes with lawmakers and agency officials.
The turning point came during a U.S. Senate Finance Committee hearing on March 15th, where Senator Bill Cassidy questioned Health and Human Services Secretary Xavier Becerra about CMS’s actions and advocated for changes. Senator Cassidy’s intervention, backed by his influence as a physician and senior Republican leader, prompted CMS to delay the implementation of the restrictions and express willingness to consider feedback and concerns raised by stakeholders.
The battle over data access and government program accountability highlights the importance of proactive public engagement in decision-making processes. Government officials do not have perfect knowledge and may inadvertently cause harm if their decisions are not subject to scrutiny and debate. It is essential for the public to monitor and hold decision-makers accountable to ensure that their interests align with those of affected stakeholders, especially in critical sectors like healthcare.
The incident also underscores the power of political will in influencing policy decisions, even without the backing of lobbying dollars. Public sentiment can still carry significant weight in shaping government actions. Ultimately, government agencies are made up of fallible human beings, and it is crucial for researchers and other stakeholders to continue advocating for transparency, data access, and accountability to ensure the well-being and prosperity of society. This collective effort can drive innovation, progress, and the advancement of public interest in shaping public policy.