Why is CMS suddenly clamping down on access to health care data for research?

In January, the Biden administration pledged to increase public access to a wide array of Medicare information to improve health care for America’s most sick and vulnerable.

Some Medicare plans’ lack of transparency “deprives researchers and doctors of critical data to evaluate problems and trends in patient care,” said Xavier Becerra, the secretary of health and human services, in a statement.

So researchers across the country were flummoxed this week when the Centers for Medicare and Medicaid Services announced a proposal that will increase fees and diminish access to claims data that has informed thousands of health care studies and influenced major public health reforms.

More than 300 academics — a who’s who of health economics researchers — have already signed a draft letter decrying the “catastrophic impact” the new proposal would have on health care research. Nearly half of all Americans are covered by Medicare, Medicaid and the Children’s Health Insurance Program. Medicare and Medicaid claims contain detailed information about payments for medical care, including diagnoses, treatments and patient demographics.

The CMS data “is a national resource,” said Anirban Basu, a professor of health economics at the University of Washington. “It’s used for research that helps to develop public policy, that helps in health equality, that plays a role in legislation. Most importantly, such research translates to better health and access for the 160 million CMS beneficiaries.”

CMS explained that the changes were aimed at better protecting people’s health care records, citing “an increase in data breaches across the healthcare ecosystem.” In its announcement, the agency did not cite any examples of unauthorized releases of information involving research organizations or universities. However, last year, hackers stole the personal medical information of more than 600,000 Medicare beneficiaries from a CMS contractor.

“Expanding user-friendly, secure access to CMS data continues to be a priority for the agency,” said Jonathan Blum, the principal deputy administrator and chief operating officer of CMS, in a statement. He added that the agency “will carefully consider how to best meet stakeholders’ data needs while protecting beneficiary data.”

Under the current system, academics are able to request claims data for a one-time fee of as little as $20,000 — a price that can increase depending on the amount of information requested. The data is stored on university computers that meet data protection requirements and that allow access to multiple users for a small additional charge.

Researchers have used such data to conduct studies that influenced numerous public health care initiatives, including the development and evaluation of the Obamacare program. Just last month, Basu published a paper, using information from the CMS programs, that analyzed the cost-effectiveness of gene therapy treatment for sickle cell disease, a blood disorder that primarily affects people of African descent.

Researchers have also used the data to discover potential abuse and fraud in Medicare and Medicaid — the two programs together account for more than $1.7 trillion in government spending.

The new proposal, however, would force researchers to use a CMS-controlled computer platform to analyze data, instead of distributing it directly to universities and other institutions. Costs would start at an estimated $35,000 and would allow access to only one researcher and require annual renewal fees. Blum noted that researchers, however, would no longer have to bear the costs of storing and securing the data.

Research teams on complex projects can include dozens of people and take years to complete. “The costs will grow exponentially and make access infeasible except for the very best resourced organizations,” said Joshua Gottlieb, a professor at the University of Chicago’s Harris School of Public Policy. He has used the data to show that when Medicare increases its fees, private insurance companies follow by hiking their own.

One of the major concerns is that higher prices will shut down research by Ph.D. students and junior faculty, whose budgets typically wouldn’t cover a single user fee. “Some important research would be reduced” if the proposal is implemented, Basu said.

Related: Insurers must now approve urgent prior authorization requests within 72 hours

Some researchers are also concerned about having to use a government-controlled system to conduct research that may be critical of CMS. Medicare Advantage — a program that allows private insurance companies to pay for health care services for the elderly — has come under increasing scrutiny for rising costs.

Another unanswered question is how the CMS computer platform would accommodate additional requests from the thousands of researchers who now use data stored on their own computers. Academics often perform complex statistical analyses on data that require extensive computer time to process.

“It seems crazy to me that given the value of human life and what we spend on healthcare as a country, that the administration would take a step to make research harder, not easier,” said Zack Cooper, a professor of public health and economics at Yale.

This story was originally published by ProPublica. Sign up to receive ProPublica’s biggest stories as soon as they’re published.