The Biden administration pledged in January to increase public access to a wide range of Medicare information to improve health care for America’s sickest and most vulnerable populations.
A lack of transparency in some Medicare plans “deprives researchers and physicians of critical data to assess patient care issues and trends,” Health and Human Services Secretary Xavier Becerra said. said in a statement.
That’s why the Centers for Medicare and Medicaid Services this week announced proposals to raise fees and limit access to insurance claims data that has informed thousands of medical studies and influenced major public health reforms. At that time, researchers across the United States were shocked.
More than 300 academics, including health economics researchers, have already signed a draft letter condemning the “devastating impact” the new proposals would have on medical research. Almost half of all Americans are covered by Medicare, Medicaid, or the Children’s Health Insurance Program. Medicare and Medicaid claims contain detailed information about medical payment, including diagnosis, treatment, and patient demographics.
Anirban Basu, a professor of health economics at the University of Washington, said CMS data is “a national resource.” “It’s used for research that helps shape public policy, that helps with health equity, that plays a role in legislation. Most importantly, research like this It is about improving the health and access of beneficiaries.”
CMS explained that the changes are aimed at better protecting people’s medical records, citing “an increase in data breaches across the healthcare ecosystem.” In its announcement, the agency did not mention any examples of unauthorized disclosure of information involving research institutions or universities. But last year, hackers stole the personal medical information of more than 600,000 Medicare beneficiaries from his CMS contractor.
“Expanding user-friendly and secure access to CMS data remains a priority for the agency,” Jonathan Bloom, CMS principal deputy administrator and chief operating officer, said in a statement. The agency added that it would “carefully consider how to best serve the data needs of our stakeholders while protecting the data of our beneficiaries.”
The current system allows academics to request claims data for a one-time fee of just $20,000. This fee may increase depending on the amount of information requested. Data is stored on university computers that meet data protection requirements and can be accessed by multiple users for a small additional fee.
Researchers have used such data to conduct research that has influenced numerous public health efforts, including the development and evaluation of the Obamacare program. Just last month, Dr. Bass published a paper using information from the CMS program to analyze the cost-effectiveness of gene therapy for sickle cell disease, a blood disorder that primarily affects people of African descent.
Researchers also used the data to uncover potential abuse and fraud in Medicare and Medicaid. Combined, the two programs will bring government spending to more than $1.7 trillion.
But the new proposal would require researchers to analyze the data using computer platforms controlled by the CMS, rather than distributing it directly to universities and other institutions. Costs start at an estimated $35,000, she is the only researcher with access, and there is an annual renewal fee. But Blum pointed out that researchers would no longer have to incur the costs of storing and protecting their data.
Research teams for complex projects can include dozens of people and take years to complete. “The costs will increase exponentially, making it inaccessible to all but the best-resourced organizations,” said Joshua Gottlieb, a professor at the University of Chicago’s Harris School of Public Policy. He used this data to show that when Medicare rates go up, private insurance companies follow suit and raise their own rates.
One of the big concerns is that the higher prices will put a stop to his research. Student and junior faculty budgets typically do not cover single user fees. If the proposal is implemented, “some important research would be cut,” Bass said.
Some researchers are concerned about having to use a government-controlled system to conduct research that could be critical of CMS. Medicare Advantage, a program that allows private insurance companies to pay for medical services for seniors, has come under intense scrutiny because of rising costs.
Another open question is how the CMS computer platform will respond to additional requests from the thousands of researchers currently using data stored on their computers. Academics often perform complex statistical analyzes on data that require large amounts of computer time to process.
“Given the value of human life and the amount of money we spend as a country on health care, it seems crazy to me that the government would take steps to make research harder rather than easier.” , said Zach Cooper, professor of public health and economics. Yell.
