Academics are sounding the alarm that new rules from the Centers for Medicare and Medicaid Services could threaten important research oversight of the programs.
CMS announced earlier this month that “growing data security concerns” prompted the agency to begin limiting Medicare and Medicaid patient data for private-sector researchers in universities and think tanks.
Starting in August, researchers looking to access patient data will see steep increases in prices to access data from the federal health systems, on top of a new project startup fee of $20,000 and an annual $10,000 fee for the project to continue.
“Research access and productivity do not need to be sacrificed in the name of data security,” University of Pennsylvania professor of medicine Rachel Werner wrote in an opinion piece about the policy. “Using data should not strain the budgets of even the most well-financed institutions.”
Researchers will also no longer be able to request that CMS send data directly to a university or research institution. Rather, researchers in the private sector will need to utilize CMS’s virtual environment for accessing data. Werner argues that having to do so will place a greater financial strain on research teams, as each team member must pay to access the information.
Hundreds of academics have signed open letters to CMS condemning the policy and highlighting the important function of research into the Medicare and Medicaid programs conducted by private research institutions. Numerous papers have been published on matters ranging from Medicare hospital readmission rates to quality of care and to the causes of the opioid epidemic.
Michael Cannon, director of health policy studies at the libertarian Cato Institute, told the Washington Examiner that he is skeptical of the loud outcry from academics. Healthcare researchers build their careers on writing policy papers using affordable CMS data, Cannon said, so their complaints are likely motivated more by protecting their self-interest than aiding the general public.
Nevertheless, Cannon said their complaints are valid.
“This is data that Medicare just produces through the course of business,” Cannon said. “And giving academics access to these data really doesn’t cost the taxpayer anything else on top of what Medicare is already costing them.”
Cannon said academic research on the functioning of Medicare and Medicaid has, in some instances, helped the public and policymakers better understand these programs that form a “tremendous black box with unimaginable complexity.”
For example, research using accessible Medicare data found that up to a third of U.S. healthcare expenses do nothing or little to improve health outcomes, which Cannon said demands more accountability.
“Recognizing all of the self-interest and incompetence at play here, I still think CMS should not be increasing the price that it’s charging for the data because, oh, my God, we need more information, not less,” Cannon said.
A spokesperson for CMS told the Washington Examiner that the agency “will carefully consider how to best meet stakeholders’ data needs while protecting beneficiary data.” The spokesperson could not identify a specific incident of data insecurity that prompted the agency’s decision.
From the libertarian perspective, Cannon said Medicare and Medicaid patient privacy is “not the most important concern” compared to oversight that could cut waste in the programs or improve patient care.
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“If you’re taking Medicare and Medicaid subsidies, you’re taking taxpayer subsidies,” Cannon said. “I don’t think we can give CMS a pass for jacking up the price of these data just because we think there might be privacy concerns.”
“Expanding user-friendly, secure access to CMS data continues to be a priority for the agency,” the spokesperson said.