The National Institutes of Health will use CMS data to study the “root causes of autism spectrum disorder.”
CMS and NIH will establish a data use agreement focused on Medicare and Medicaid enrollees with an autism spectrum disorder diagnosis, according to a May 7 news release from HHS.
The pilot of the data sharing program will focus on ASD but will later be expanded to research on chronic conditions and healthcare utilization, according to HHS.
In April, HHS Secretary Robert F. Kennedy, Jr. said he would assemble a team to research and report on the causes of ASD by September. Autism organizations and mental health providers have raised concerns with Mr. Kennedy’s characterization of autism as a “chronic disease” and an “epidemic.”
“Claims that Autism is ‘preventable’ is not supported by scientific consensus and perpetuate stigma. Language framing Autism as a ‘chronic disease,’ a ‘childhood disease’ or ‘epidemic’ distorts public understanding and undermines respect for Autistic people,” a group of six autism advocacy organizations wrote in an April 17 statement from Autism Speaks.
Groups have also raised concerns that the NIH’s data collection efforts will violate patient privacy. Autistic individuals, parents of autistic children and behavioral health providers told The Guardian May 5 that broad data collection could be used to discriminate against autistic people and could discourage participation in future research.
HHS officials have said the research is not an “autism registry,” an HHS spokesperson told The Guardian.
“Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease – ultimately superior health outcomes to the Americans we serve,” NIH Director Jay Bhattacharya, MD, said in the news release.
In response to the NIH’s efforts, Illinois Gov. JB Pritzker plans to sign an executive order to restrict the collection of autism-related data in the state unless it is required for medical care, legal compliance or program eligibility, the Chicago Sun-Times reported May 7. If finalized, Illinois would be the first state to restrict the collection of sharing of autism-related data, according to the outlet.