Earlier this month, two federal health agencies announced they are partnering to transform how health data is used in medical research — starting with autism.
The National Institutes of Health and the Centers for Medicare and Medicaid are launching a major data-sharing initiative to improve chronic disease research.
The first project will look at autism spectrum disorder. The project aims “to uncover the root causes of autism and other chronic diseases.”
"And ultimately, in the words of the secretary of Health and Human Services, to develop cures for autism," says Jon Meyers is the executive director of the Arizona Developmental Disabilities Planning Council.
"Now, it's important to note that autism has been studied for 40 or 50 years pretty intensively. And there have been a lot of research papers, there have been a lot of very large-scale comprehensive studies that have been unable to determine what a cause for autism is," Meyers said.
He says the response within the community is mixed, "What is being proposed, I think in some quarters it would be seen as a very positive step. In other quarters it is seen as something that is an invasion of privacy."
The platform would combine claims data, electronic medical records and consumer wearable data. The work could eventually be expanded to other chronic conditions.
"We just have so many questions that have been unanswered and the vague assurances that have been provided are not much comfort to people who understand history and understand how particular populations have been targeted and have been ostracized in the past," Meyers said.
NIH Director Dr. Jay Bhattacharya says the data platform will be fully compliant with privacy and security laws.
