If you have been following health news in North America, you may have seen people discussing the US federal government’s Department of Health and Human Services plans to create a database of people who have autism.
Understandably, the idea that a bunch of kooks and quacks led by admitted brain parasite host Robert F. Kennedy Jr, gathering personal information about people who have been diagnosed as on the autism spectrum has prompted an outcry on social media and in the press.
The good news is, however, that this is a misunderstanding. The leader of the NIH Dr. Jay Bhattacharya explained in a press release this week, that rather than shady characters producing a list of individuals with autism, this initiative is an exercise in data sharing.
While they will be collecting data for large-scale studies on autism, this data will be anonymized and handled only by professional scientists employed by the NIH, and university employed research teams it supports.
The NIH will be partnering with the Centers for Medicare & Medicaid Services to build a data-sharing platform. Austism researchers, and in future, other medical researchers will be able to access data collected by the CMS in a more streamlined process. Researchers already have the ability to acquire the data, it’s just that right now there are a lot of hoops to jump through to get there.
‘This partnership is an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives,’ Bhattacharya said. ‘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 delivering superior health outcomes to the Americans we serve.’
This project will provide autism researchers with an easy to navigate, accessible platform making data sharing easier and faster. Large-scale observational studies will allow the investigators to probe for answers to long-time questions such as which medical and behavioural interventions work and which don’t, trends in diagnosis and prevalence and how resources for people on the spectrum are being shared across the country.
One of the very few advantages to the United States’ health care system is that insurance companies have accumulated the most comprehensive library of easily anonymized medical data known to man. The federal government’s medical funding programs for people who do not have access to private health care, run by Centers for Medicare & Medicaid Services, follows similar reporting and data collecting practices.
The level of detail required to code diagnoses in order for actuaries to calculate premiums allows medical researchers to perform cohort studies at an astonishingly granular level.
Using insurance data or health records is a routine element of medical research and without it, epidemiological studies would be very difficult.
NIH, CMS Partner to Advance Understanding of Autism Through Secure Access to Select Medicare and Medicaid Data. National Institutes of Health (NIH). May 6, 2025. Accessed May 7, 2025. https://www.nih.gov/news-events/news-releases/nih-cms-partner-advance-understanding-autism-through-secure-access-select-medicare-medicaid-data
If you have been following health news in North America, you may have seen people discussing the US federal government’s Department of Health and Human Services plans to create a database of people who have autism. Understandably, the idea that a bunch of kooks and quacks led by admitted brain parasite host Robert F. Kennedy Jr, gathering personal information about people who have been diagnosed as on the autism spectrum has prompted an outcry on social media and in the press. The good news is, however, that this is a misunderstanding. The leader of the NIH Dr. Jay Bhattacharya explained in a press release this week, that rather than shady characters producing a list of individuals with autism, this initiative is an exercise in data sharing. While they will be collecting data for large-scale studies on autism, this data will be anonymized and handled only by professional scientists employed by the NIH, and university employed research teams it supports. The NIH will be partnering with the Centers for Medicare & Medicaid Services to build a data-sharing platform. Austism researchers, and in future, other medical researchers will be able to access data collected by the CMS in a more streamlined process. Researchers already have the ability to acquire the data, it’s just that right now there are a lot of hoops to jump through to get there. ‘This partnership is an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives,’ Bhattacharya said. ‘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 delivering superior health outcomes to the Americans we serve.’ This project will provide autism researchers with an easy to navigate, accessible platform making data sharing easier and faster. Large-scale observational studies will allow the investigators to probe for answers to long-time questions such as which medical and behavioural interventions work and which don’t, trends in diagnosis and prevalence and how resources for people on the spectrum are being shared across the country. One of the very few advantages to the United States’ health care system is that insurance companies have accumulated the most comprehensive library of easily anonymized medical data known to man. The federal government’s medical funding programs for people who do not have access to private health care, run by Centers for Medicare & Medicaid Services, follows similar reporting and data collecting practices. The level of detail required to code diagnoses in order for actuaries to calculate premiums allows medical researchers to perform cohort studies at an astonishingly granular level. Using insurance data or health records is a routine element of medical research and without it, epidemiological studies would be very difficult. NIH, CMS Partner to Advance Understanding of Autism Through Secure Access to Select Medicare and Medicaid Data. National Institutes of Health (NIH). May 6, 2025. Accessed May 7, 2025. https://www.nih.gov/news-events/news-releases/nih-cms-partner-advance-understanding-autism-through-secure-access-select-medicare-medicaid-data
