The Medicare and Medicaid programs cover more than 40% of insured U.S. population. In 2022, taxpayers spent $1.8 trillion on these programs, one-third greater than on private programs. Most academic studies and industry reports on these programs were made possible by researchers’ access to data collected by the Centers for Medicare and Medicaid Services (CMS). CMS monopolizes such data and is now seeking a hefty rent through an ugly power play.
On Monday, CMS announced that it will terminate existing institutional access to Medicare and Medicaid data. All future access must take place through its excessively priced channel with substantial restrictions. Regardless of public feedback, CMS will start implementing these mandates within 10 weeks.
At least three negative consequences will ensue. First, public monitoring of Medicare and Medicaid programs will dwindle, harming enrollees and taxpayers while protecting CMS from unwanted external scrutiny. Medicare and Medicaid programs, dictated by the government, face no competition. The only motivation for CMS to improve program performance comes from the public awareness of its suboptimal performance and the resultant political pressure. Both hinge on data access.
No matter how many experts CMS hires and how much money it spends on self-improvement, the insights it gathers will never match the collective wisdom of numerous researchers from the private sector. Restricting data access prevents solutions from emerging and deprives Medicare and Medicaid enrollees from enjoying better-run programs and improved health.
Second, independent research efforts will be killed, and future data access will be concentrated among elite institutions heavily dependent on government funding and powerful private foundations. In fact, the existing data access channel, already expensive and cumbersome, has erected barriers for small and mid-sized research communities and restricted competition in the market of ideas. CMS’s new mandates will completely shut them out and facilitate political and special intersts’ influence on research agenda and public narratives.
Third, mandating the exclusive use of CMS’ own excessively priced channel will benefit cronies. With an enormous amount of access fees to be collected and spent, the public has no reason to believe that the decision was not motivated by insider interest.
CMS cited “growing data security concerns and an increase in data breaches across the healthcare ecosystem” as the reason for its mandates without any detail. Unless CMS provides evidence that previous breaches were actually caused by researchers’ access to CMS data and no targeted solution is currently available to mitigate data breach risks, the public will have to view CMS as using data safety merely as an excuse to expand agency power and harm societal interest.
Ironically, CMS, aiming to suppress transparency in its own data, is enforcing various transparency requirements across hospitals, clinicians, insurance companies, and other stakeholders. CMS also purportedly wants to promote competition, but it dislikes its data monopoly position and pricing gouging scheme being challenged.
CMS’s power play is rooted in its misperceptions that it owns Medicare and Medicaid data, that it nobly grants data privileges to the public, and that broad public scrutiny harms its legitimacy. However, CMS is paid by taxpayers to manage taxpayer-funded programs, prone to mistakes and conflict of interest like any other entity. The only way to evaluate how CMS does its job is broad access to these programs’ data, which are collected by CMS but ultimately belong to the American people.
If CMS is truly interested in the wellbeing of Medicare and Medicaid enrollees and accountability toward taxpayers, it should allow researchers inexpensive, convenient, and unrestricted access to deidentified data. Researchers from a broad diversified spectrum will compete to explore new knowledge and debate competing solutions, creating free and invaluable feedback to CMS. Such a vibrant and dynamic research ecosystem brings optimal societal outcomes.
In ten weeks, CMS will close its data doors, indicating no intention to change course. It’s time for Congress to remind CMS loud and clear: You do not own the data. We the people do.
