U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. is unveiling plans to give researchers access to data on Medicare and Medicaid enrollees with autism, though experts are doubtful that the effort will identify the condition’s causes.

The National Institutes of Health said Wednesday that it is partnering with the Centers for Medicare & Medicaid Services to access the data to establish a “real-world data platform,” which will allow research across claims, electronic medical records and consumer wearables.

Initially, the platform will be used to study autism as part of a pilot program before being expanded to examine “healthcare utilization, chronic disease etiology and treatment, and the economic burden of chronic conditions,” NIH said.

“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said. “We’re pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear.”

Researchers will use the new platform to look at trends in autism diagnosis over time, outcomes from medical and behavioral interventions, access to care and disparities as well as the economic burden on families and health care systems, NIH said.

The announcement comes just weeks after NIH Director Dr. Jay Bhattacharya said that his agency would amass private medical records from federal and commercial sources to study autism. The plan sparked backlash leading officials with the Department of Health and Human Services to clarify that they are creating a “secure data repository that will enable researchers to analyze large-scale, de-identified data,” not “creating an autism registry to track individuals using personal data.”

Now, NIH is emphasizing that it will comply with all applicable privacy laws.

“Teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,” according to this week’s announcement.

Despite those assurance, questions remain about whether data in the platform will include personally identifiable information, said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network.

“The press release does not clarify whether the data will be de-identified,” she said. “Normally data privacy protections would be enforced by offices within HHS, like HHS Office of Civil Rights or Office of Human Research Protections. However, Secretary Kennedy’s HHS has lost the trust of the autistic community and we can no longer automatically assume that they will follow normal research protocols and best practices.”

In addition, Gross said her group is worried about how data will be used, particularly when officials employ words like “economic burden,” which can be stigmatizing.

David Mandell, a professor of psychiatry at the University of Pennsylvania, said that he’s been using Medicaid data for 20 years to study the experiences of people with autism and that NIH and CMS have been partnering for decades to share data for this type of research. What’s new, he said, is the idea of adding in data from electronic health records and consumer wearables.

It’s unclear how NIH will gain access to electronic health records, which health systems do not have to share with CMS, or what privacy protections will be put in place for these new data sources, Mandell said. He also wondered what role consumer wearables could play.

“Why do you need wearables data to study autism,” he asked. “Who are you putting the Apple Watch on? The toddler? What do they expect to get out of that?”

In addition, there are questions about the benefits of the planned platform. Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University and the leader of the Coalition of Autism Scientists, a group of hundreds of researchers in the field, said that no one has used Medicare and Medicaid data to examine the causes of autism or prevalence rates because it does not include the entire population of U.S. children on the spectrum.

“Some families have private insurance or self-pay, some children receive their services through the schools, etc. These factors will influence findings on disparities in access to care,” she said. “The (Medicare/Medicaid) data can’t address questions about causes of autism because it will not have information on the genetics for most of the children it includes, nor will there be relevant information about many environmental exposures.”