The Medicare and Medicaid programs cover more than 40% of the insured population in the United States. In 2022, taxpayers spent his $1.8 trillion on these programs, which was one-third of his private programs. Most of the academic research and industry reports on these programs have been made possible by researchers’ access to data collected by the Centers for Medicare and Medicaid Services (CMS). CMS has monopolized that data and is now demanding high rents through an ugly power play.
On Monday, CMS announced it would end existing agency access to Medicare and Medicaid data. All future access must be through expensive channels with significant restrictions. Regardless of public feedback, CMS will begin implementing these mandates within his 10 weeks.
There are at least three negative consequences. First, public oversight of the Medicare and Medicaid programs would be weakened, protecting CMS from unwanted outside scrutiny while harming enrollees and taxpayers. There is no competition in the government-mandated Medicare and Medicaid programs. The only incentive for CMS to improve program performance comes from public perception that its performance is suboptimal and the resulting political pressure. Both rely on data access.
No matter how many experts CMS employs and how much money it spends on self-improvement, the insights it collects will never match the collective wisdom of scores of researchers in the private sector. Restricting data access prevents solutions from emerging and prevents Medicare and Medicaid enrollees from receiving better-run programs and improved health outcomes.
Second, independent research efforts will be crushed and future data access will be concentrated in elite institutions that rely heavily on government funding and powerful private foundations. Indeed, existing data access channels are already expensive and cumbersome, erecting barriers for small and medium-sized research communities and limiting competition in the marketplace of ideas. CMS’s new mandate will completely shut them out and foster the influence of political and special interests on the research agenda and public discourse.
Third, mandating exclusive use of CMS’s own overpriced channels will benefit cronies. With huge access fees being collected and spent, the public has no reason to believe that this decision was not motivated by insider interests.
CMS cited “increasing data security concerns and an increase in data breaches across the healthcare ecosystem” as reasons for the mandate, but did not provide further details. Unless CMS provides evidence that past breaches were in fact caused by access to CMS data by researchers, there are currently no targeted solutions available to reduce the risk of data breaches. The public will be forced to see CMS as simply using data security as a pretext to expand the agency’s powers. and harm social interests.
Ironically, CMS is enforcing various transparency requirements across hospitals, clinicians, payers, and other stakeholders with the goal of curbing transparency in its own data. CMS also reportedly wants to promote competition, but is loathe to have its data monopoly positions and price gouging schemes challenged.
CMS’s power play is rooted in the false perception that CMS owns Medicare and Medicaid data, arrogantly confers data privileges on the general public, and that widespread public oversight undermines CMS’s legitimacy. ing. However, CMS is paid by taxpayers to administer taxpayer-funded programs and, like any business entity, is prone to errors and conflicts of interest. The only way to assess how a CMS performs is to have widespread access to data from these programs. Although the data is collected by CMS, it ultimately belongs to the American public.
If CMS truly cared about the well-being of its Medicare and Medicaid enrollees and its accountability to taxpayers, it would give researchers cheap, convenient, and unrestricted access to anonymized data. Researchers from a wide range of diverse fields will compete to explore new knowledge, discuss competing solutions, and generate free and valuable feedback to CMS. Such a vibrant and dynamic research ecosystem delivers optimal outcomes for society.
Within 10 weeks, CMS will close the data door and indicate no intention to change course. It’s time for Congress to clearly remind CMS that you don’t own your data. So do we the people.
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