Much of what’s known about the experiences of people with autism and other developmental disabilities is based on Medicaid and Medicare data, but researchers are warning that a new proposal could sharply limit access to that information.

The Centers for Medicare & Medicaid Services wants to dramatically change the rules surrounding how researchers can tap what’s known as Research Identifiable File data while significantly hiking fees for such access.

Currently, researchers can pay to use CMS’s cloud-based system or, for a cheaper price, they can obtain files from the agency to store at their institution.

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However, citing “growing data security concerns and an increase in data breaches across the healthcare ecosystem,” CMS is now looking to require all access to go through its cloud-based system. Only federal and state agencies would be eligible to request an exception to the new policy. At the same, the agency is planning to update its pricing.

Under the plan, researchers would pay an upfront cost starting at $20,000, plus an annual renewal fee of $10,000 and the costs would apply to each user. That’s a significant factor since many research projects involve teams.

The new policies could start taking effect as soon as Aug. 19.

The proposal, which was first released as part of a Request for Information in February, is setting off alarm bells for researchers who rely on data from the agency. CMS subsequently extended the deadline for stakeholders to submit feedback until May 15.

“This would pretty much shut down my line of research that looks at Medicaid and Medicare,” said Eric Rubenstein, an assistant professor at the Boston University School of Public Health who has used CMS data to examine everything from autism prevalence in adults to heath care use among those with Down syndrome.

“Currently, I have a grant that (costs) me $250,000 in data costs. If a student wants to use the data for their dissertation, it is free. If I want to use the data for a different project it costs $2,000. I also have 12 staff and students working with the data on sub projects,” Rubenstein said. “Under the new proposal, we are looking at $40,000 per year in project costs, plus (about) $20,000 per year per user. So my first five-year project would be $2.5 million compared to current $250,000. And for every subsequent project I would need to pay the same cost.”

David Mandell, a professor of psychiatry at the University of Pennsylvania, said that the CMS data in question has been essential to expanding knowledge about the experiences of kids and adults with autism in the last two decades. The data is at the heart of studies showing the high rates of polypharmacy, emergency room use and hospitalization in this population as well as the variation in care from state to state and the impact of Medicaid waivers and respite care.

The CMS proposal would “dramatically increase the costs associated with doing this research,” Mandell said. All the while, he noted, that the cap for the National Institutes of Health grants that often fund this type of research haven’t changed in about 20 years.

Meanwhile, the shift in costs could stifle the development of new talent in the field who may have less opportunity to participate in research projects during their training, according to John Tschida, executive director of the Association of University Centers on Disabilities.

“Our network trains thousands of students each year — the leading disability researchers and health, education and public health practitioners of tomorrow,” said Tschida who warned of the “chilling effect” that the CMS plan may have on future research. “What research won’t be done on Medicaid and Medicare data because of these exorbitant prices?”

A CMS spokesperson said that it is the agency’s priority to expand “user-friendly, secure access” to the data.

“CMS appreciates researchers’ comments to help the agency carefully consider how to best meet their data needs while protecting beneficiary data and is expanding its request for feedback and providing additional time for public input,” the spokesperson said in a statement.

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