Trump administration health care officials on Wednesday revealed further information about plans to create an autism spectrum disorder (ASD) data bank – a project that has sparked a mix of support, skepticism and alarm from autism-community stakeholders.
On May 7, the U.S. Centers for Medicare & Medicaid Services (CMS) announced a new “landmark” partnership with the National Institutes of Health (NIH) to build a first-of-its-kind data bank dedicated to researching autism. The new data platform will pull from medical records, claims data and “consumer wearables,” according to CMS.
CMS did not provide specifics around what those wearables will be, how they’ll get into the hands of consumers or what kind of information the wearables will track.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr., said in a statement. “We’re pulling back the curtain – with full transparency and accountability – to deliver the honest answers families have waited far too long to hear.”
News regarding the Trump administration’s pursuit of a national autism registry first surfaced toward the end of April.
Days after that information came out, HHS began to distance itself from the idea of a “registry.” Instead, HHS said it would work to link existing federal databases to centralize data around ASD.
It is unclear how, or if, a new data platform with NIH is different from a national autism registry. NIH currently maintains several dozen health care registries on conditions and diseases such as Alzheimer’s and various cancers.
The inconsistent positioning and details around the new ASD data tool have, thus far, contributed to a growing sense of anxiety among some in the autism community.
“While the initiative is now being described as a platform or database, many parents are reacting to it as the national registry HHS first proposed, which raised significant concerns for the parents we work with around protecting and maintaining their privacy and, most importantly, the privacy of their child,” Krista Boe, chief clinical and compliance officer for Acorn Health, told Autism Business News in an email.
Acorn Health provides applied behavior analysis (ABA) therapy for children with ASD across locations in several states, including Florida, Michigan, Illinois and Tennessee, among others.
In recent weeks, Acorn Health has had a number of parents cancel scheduled assessment and diagnostic appointments for their children because of their concerns, Boe said.
The provider has also had parents inquire about how Acorn is protecting their child’s personal medical information in light of the Trump administration’s plans.
“As clinicians, we know the sooner a child showing symptoms of autism is diagnosed and starts treatment, the more likely it is that the child can grow up to enjoy an independent, meaningful life,” Boe continued. “It would be disastrous if concerns around a new registry or database lead to a reduction in children receiving needed, timely treatment.”
In its May 7 announcement, CMS said that the agency and NIH will collect data “in a manner consistent with applicable privacy laws to protect Americans’ sensitive health information.”
“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,” NIH Director Dr. Jay Bhattacharya said in the announcement.
The research focus
The timeline for when the new data platform will be up and running remains unclear.
First, CMS and NIH will establish a data-use agreement under CMS’ Research Data Disclosure Program focused on Medicare and Medicaid enrollees with a diagnosis of ASD, the May 7 announcement explained.
“Using ASD as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,” it stated.
Once everything is in place, researchers will focus on autism diagnosis trends over time, as well as health outcomes from specific medical and behavioral interventions. Other areas of study will include access to care, disparities by demographics and geography, and ASD’s “economic burden on families and health care systems,” according to CMS.
Moving forward, the creation of an ASD data registry based on insurance claims and other data could have the potential to advance the nation’s understanding of incidence, treatment patterns and regional variability of autism, Jim Spink, CEO of Autism Care Partners, told ABN.
“It is critically important, however, to recognize the limitations of claims information given health equity and access to care barriers, insurance coverage challenges, and provider scarcity in rural and underserved areas,” Spink cautioned.
Autism Care Partners delivers a range of services for individuals on the autism spectrum and their families, including diagnostic evaluations, plus ABA, speech and occupational therapy. Its markets include Massachusetts, New Hampshire, New York, Rhode Island and Vermont.
“It is my hope that CMS would complement a claims data set with non-claims sources to have a fuller understanding of the patient and family experience while pursuing an ASD diagnosis and accessing evidence-based care,” Spink said. “Without a holistic view, CMS runs the risk of implementing underinformed policy decisions which would further exacerbate health disparities in the ASD community.”
‘Autism is not a hidden mystery’
The most recently released federal data suggests the national prevalence rate of autism is now 32.2 per 1,000 among eight-year-old children, or 1 in 31.
HHS Secretary Kennedy has previously made claims that autism is a disease that could be treated. The overwhelming body of health care research has suggested otherwise, instead linking autism to genetic factors.
“It’s important to ensure funding exists for research and treatment of autism and other chronic conditions,” another autism services provider executive told ABN. “Autism is not a hidden mystery being kept from the public. Scientists, advocates, behavior analysts, medical professionals and autistic individuals themselves have been working with transparency to better understand and support the autistic community.”
The government and autism-community stakeholders must work together to ensure the focus remains on inclusive, respectful dialogue and evidence-based research, the executive emphasized.
