The National Institutes of Health (NIH) announced plans to utilize data from federal health insurance programs, Medicare and Medicaid, to establish a “real-world data platform” aimed at identifying the causes of autism. This initiative was revealed in a recent announcement by the agency.
The Department of Health and Human Services (HHS) stated that the NIH would collaborate with the Centers for Medicare & Medicaid Services (CMS) to create this platform. The project will incorporate insurance claims, electronic medical records, and data from wearable health devices such as smartwatches.
HHS Secretary Robert F. Kennedy Jr. indicated that this partnership seeks to discover the root causes of autism and other chronic diseases. The initial focus will be on individuals enrolled in Medicare and Medicaid, encompassing about 36% of the American population, with plans to subsequently expand to other chronic health conditions.
The project will utilize Autism Spectrum Disorders (ASD) as the pilot research program, establishing a secure, tech-enabled method for data sharing that complies with privacy and security regulations. However, concerns were raised last month following NIH Director Jay Bhattacharya’s announcement about compiling a database of Americans with autism. This caused alarm due to the potential creation of a national autism registry, though multiple news outlets later reported that the intention is to create a data platform linking existing datasets.
Bhattacharya emphasized the importance of this collaboration with CMS, citing it as a vital step towards harnessing real-world data to make informed public health decisions and enhance health outcomes. The linking of CMS claims data with a secure NIH data platform, compliant with privacy regulations, aims to facilitate landmark research into the complex factors contributing to autism and chronic diseases.
Despite reassurance from NIH, privacy advocates and the autistic community have expressed concerns about how patient data will be used and protected. Helen Tager-Flusberg, director of the Center for Autism Research at Boston University, highlighted the risk that personal information could be misused. She questioned how privacy would be ensured given that CMS data could potentially identify individuals through characteristics such as age, sex, and location.
The initiative aligns with Kennedy’s promise to identify the cause of autism and eventually eliminate it, despite his controversial claims linking autism to vaccines and environmental toxins. These claims have been refuted by medical science, which suggests that no single cause for autism exists.
A report from the Centers for Disease Control and Prevention indicated a rise in autism prevalence, from 1 in 36 children five years ago to 1 in 31 children in 2022, likely due to expanded screening efforts.
