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HHS to build Medicare, Medicaid database on autism, other chronic illnesses

HHS to build Medicare, Medicaid database on autism, other chronic illnesses
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HHS to build Medicare, Medicaid database on autism, other chronic illnesses
The U.S. Department of Health and Human Services on Wednesday unveiled a pilot program for the National Institutes of Health to tap into Medicare and Medicaid data in its search for the root causes of autism.The database 鈥� which HHS said will draw from insurance claims, medical records, and data from wearable technology such as smartwatches 鈥� is one of the first steps in HHS Secretary Robert F. Kennedy Jr.鈥檚 bid to find the causes of autism 鈥渂y September.鈥漎et early signals from health officials that they would build a database to track autism were met with swift rebuke from advocacy organizations and doctors.NIH Director Dr. Jay Bhattacharya鈥檚 initial description last month of a 鈥渘ew autism registry鈥� with 鈥渂road coverage鈥� of the U.S. population raised red flags and questions about privacy, the Autism Science Foundation said in a statement shortly after the news. The Autism Self Advocacy Network lambasted the project as an example of how this administration has 鈥渃ompletely frozen out autistic people.鈥滺HS nodded to those concerns in its announcement Wednesday. It said NIH and Centers for Medicare & Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder, then establish a 鈥渟ecure tech-enabled mechanism鈥� that will share data with 鈥渢imely, privacy and security compliant data exchange.鈥� The agencies will eventually build the pilot database out to share data on chronic illnesses and their economic burden, HHS said.鈥淓ver since the registry was first announced, there was an enormous sense of fear in the autism community, and they have concerns: Who鈥檚 going to have access to data? How are those data going to be used?鈥� Helen Tager-Flusberg, director of Boston University鈥檚 Center for Autism Research and leader of the Coalition of Autism Scientists, told CNN.There are also limitations to CMS data, Tager-Flusberg said. 鈥淚f you鈥檙e talking about Medicare and Medicaid, that only focuses on certain portions of the population.鈥滿edicaid is a federal and state partnership covering low-income adults and children. Medicare is a federal program primarily for Americans 65 and older, although younger people with disabilities are also enrolled.There are permissible uses of CMS data for medical research but very stringent privacy laws, Jeff Wurzburg, former HHS general counsel and a health care regulatory attorney at Norton Rose Fulbright, told CNN before Wednesday鈥檚 announcement. 鈥淥ne of the primary, overarching goals of CMS is protection of the beneficiary. So it鈥檚 certainly legitimate and reasonable to raise questions about how this data will be collected and protected.鈥滱utism advocates and scientists have also questioned Kennedy鈥檚 claim that health agencies would find the causes of autism by September, a timeline that Bhattacharya already appeared to walk back.鈥淪cience happens at its own pace. We鈥檙e accelerating and cutting the red tape that normally comes with putting together a scientific program like this,鈥� he told reporters on April 22. 鈥淲e鈥檒l have, I hope, in September, something that in place where the scientists that want to want to compete for these awards will be able to do that.鈥�

The U.S. Department of Health and Human Services on Wednesday unveiled a pilot program for the National Institutes of Health to tap into Medicare and Medicaid data in its search for the root causes of autism.

The database 鈥� which HHS said will draw from insurance claims, medical records, and data from wearable technology such as smartwatches 鈥� is one of the first steps in HHS Secretary Robert F. Kennedy Jr.鈥檚 bid to find the causes of autism 鈥渂y September.鈥�

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Yet early signals from health officials that they would build a database to track autism were met with swift rebuke from advocacy organizations and doctors.

NIH Director Dr. Jay Bhattacharya鈥檚 initial description last month of a 鈥渘ew autism registry鈥� with 鈥渂road coverage鈥� of the U.S. population raised red flags and questions about privacy, the Autism Science Foundation said in a statement shortly after the news. The lambasted the project as an example of how this administration has 鈥渃ompletely frozen out autistic people.鈥�

HHS nodded to those concerns in its announcement Wednesday. It said NIH and Centers for Medicare & Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder, then establish a 鈥渟ecure tech-enabled mechanism鈥� that will share data with 鈥渢imely, privacy and security compliant data exchange.鈥� The agencies will eventually build the pilot database out to share data on chronic illnesses and their economic burden, HHS said.

鈥淓ver since the registry was first announced, there was an enormous sense of fear in the autism community, and they have concerns: Who鈥檚 going to have access to data? How are those data going to be used?鈥� Helen Tager-Flusberg, director of Boston University鈥檚 Center for Autism Research and leader of the Coalition of Autism Scientists, told CNN.

There are also limitations to CMS data, Tager-Flusberg said. 鈥淚f you鈥檙e talking about Medicare and Medicaid, that only focuses on certain portions of the population.鈥�

Medicaid is a federal and state partnership covering low-income adults and children. Medicare is a federal program primarily for Americans 65 and older, although younger people with disabilities are also enrolled.

There are permissible uses of CMS data for medical research but very stringent privacy laws, Jeff Wurzburg, former HHS general counsel and a health care regulatory attorney at Norton Rose Fulbright, told CNN before Wednesday鈥檚 announcement. 鈥淥ne of the primary, overarching goals of CMS is protection of the beneficiary. So it鈥檚 certainly legitimate and reasonable to raise questions about how this data will be collected and protected.鈥�

Autism advocates and scientists have also questioned Kennedy鈥檚 claim that health agencies would find the causes of autism by September, a timeline that Bhattacharya already appeared to walk back.

鈥淪cience happens at its own pace. We鈥檙e accelerating and cutting the red tape that normally comes with putting together a scientific program like this,鈥� he told reporters on April 22. 鈥淲e鈥檒l have, I hope, in September, something that in place where the scientists that want to want to compete for these awards will be able to do that.鈥�