MORE FROM THE STACKS
EDITOR’S NOTE: There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!
NIH, CMS Partner to Advance Understanding of Autism Through Secure Access to Select Medicare and Medicaid Data
NIH (05/07/2025)
The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) today announced a landmark partnership to enable NIH to build a real-world data platform enabling advanced research across claims data, electronic medical records, and consumer wearables.
This partnership will focus first on enabling research around the root causes of autism spectrum disorder (ASD). In the long term, the partnership will link real-world data, in a manner consistent with applicable privacy laws to protect Americans’ sensitive health information, for research on chronic conditions—a core priority of President Trump and the Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” said HHS Secretary Robert F. Kennedy, Jr. “We’re pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear.”
CMS and NIH will start this partnership by establishing a data use agreement under CMS’ Research Data Disclosure Program focused on Medicare and Medicaid enrollees with a diagnosis of ASD. 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. This pilot research program will inform continued development of a landmark NIH platform to ultimately be used by researchers in understanding healthcare utilization, chronic disease etiology and treatment, and the economic burden of chronic conditions.
“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,” said NIH Director Dr. Jay Bhattacharya. “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.”
Researchers will focus on:
Autism diagnosis trends over time
Health outcomes from specific medical and behavioral interventions
Access to care and disparities by demographics and geography
The economic burden on families and healthcare systems
With ASD prevalence now affecting 1 in 31 children(link is external) in the United States, and with more than 25% of those individuals experiencing profound or severe autism, the need for multi-source, real-world data insights have never been more urgent.
“This joint effort aligns with our shared goal of fostering innovation to improve Americans’ lives while safeguarding patient privacy,” said CMS Administrator Dr. Mehmet Oz. “I look forward to working with Dr. Bhattacharya on this critical project.”
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
NIH…Turning Discovery Into Health®
People with Disabilities: Information on the Healthcare Workforce and Provider Training
GAO-24-106789 Published: 04/30/2024. Publicly Released: 05/30/2024.
Fast Facts
In 2021, about 13% of people in the U.S. reported having a disability, including trouble walking, cognitive or hearing impairments, and difficulty living independently. People with disabilities also experience challenges accessing health care and may not always receive appropriate care.
Our Q&A report shows that most health care providers would benefit from more training on meeting the needs of people with disabilities—even though such training isn't widely required. Experts we spoke to suggested incorporating more disability content in clinical training, engaging the disability community in training development, and more.
Highlights
What GAO Found
An estimated 13 percent of people in the United States reported having a disability in 2021, according to the Annual Disability Statistics Compendium analysis of U.S. Census Bureau data. The U.S. Census Bureau defines a disability as a physical, mental, or emotional condition that causes vision or hearing impairments, or makes it seriously difficult for a person to perform activities such as walking, climbing stairs, dressing, bathing, concentrating, remembering, or running errands alone. People with disabilities are less likely to be employed, and may be underrepresented in certain health care occupations compared to people without disabilities.
People with disabilities comprised an estimated 6 percent of employed people in the United States in 2021, according to GAO's analysis of compendium estimates. Among the standard occupation groups related to health care, people with disabilities comprised an estimated 8 percent of those employed in health care support, such as home health aides, and an estimated 4 percent of health care practitioners and technicians.
People with disabilities experience challenges accessing health care and are at increased risk of health disparities, such as lower life expectancy. Stakeholders GAO interviewed noted that disability training for health care providers is not widely required or standardized by the organizations that accredit provider training programs. While GAO identified several disability-related training programs, including some supported by the Department of Health and Human Services (HHS), stakeholders said that providers need additional training. Stakeholders noted that limited training can affect the care people with disabilities receive, including contributing to delays in receiving care, or the need to travel long distances. Stakeholders identified several best practices for disability training:
Incorporate disability content into existing training.
Offer direct engagement with the disability community.
Target provider bias and disability stereotypes.
Why GAO Did This Study
GAO was asked to examine the prevalence of people with disabilities in the health care workforce, and to describe how providers are trained to meet the health needs of people with disabilities. This report describes the prevalence of people with disabilities in the United States by type of disability, employment status, and certain occupation groups. It also describes examples and stakeholder perspectives related to the training providers receive to meet the health care needs of people with disabilities.
GAO reviewed and analyzed information in the Annual Disability Statistics Compendiums, which are based on data from the U.S. Census Bureau's American Community Survey. GAO also interviewed officials from HHS and 14 stakeholder organizations representing a range of perspectives, including educators, trainees, researchers, providers, and the disability community; reviewed research studies and online training repositories; and conducted web-based research.
For more information, contact Leslie V. Gordon at (202) 512-7114 or GordonLV@gao.gov.
Neuralink Brain Implant Allows ALS Patient to Communicate
By Jessica Hagen (Mobihealthnews.com – 05/05/2025)
Elon Musk's startup Neuralink has successfully implanted its brain-computer interface into a man named Brad Smith, who has ALS and is completely non-verbal, allowing him to communicate now using telepathy.
Smith released a video on X about his experience with Neuralink and how it works. The video is narrated using an AI-generated replica of Smith's voice cloned from past recordings, and Smith uses the BCI to control the mouse on his MacBook Pro to perform the narration.
Smith cannot move anything but his eyes and relies on a ventilator to stay alive. Before Neuralink, he used an eye gaze control computer for communication, but Neuralink allows him to communicate much more fluidly.
In the video on X, Smith extensively highlights his current abilities using telepathy.
"I have spent the last few years with ideas and thoughts that I cannot share because it takes too much time to type it out," Smith said in the video. "I can already communicate faster and in more ways than I could before, and we are still working on ways to get even faster."
THE LARGER TREND
Neuralink's brain-computer interface involves the placement of a small, cosmetically invisible implant in the area of a person's brain that plans movements. The N1 implant is designed to interpret one's neural activity to assist them in operating a computer or smartphone by simply intending to move.
The company announced in early 2024 that 29-year-old quadriplegic Noland Arbaugh became the first person to receive one of Neuralink's BCI implants during the company's PRIME study. The implant resulted in Arbaugh being able to play chess and video games hands-free.
“Brad Smith is the third person in the world to receive Neuralink’s brain-computer implant and the first person with ALS.”
In August, a second person, Alex, who had similar injuries to Arbaugh, was the second trial participant to receive the implant. Neuralink said in a statement that "with the Link, [Alex] has been improving his ability to play video games and began learning how to use computer-aided design (CAD) software to design 3D objects."
In November, Neuralink announced it received approval from Health Canada to perform a clinical trial on its N1 brain implant and R1 robot.
The "Canadian Precise Robotically Implanted Brain-Computer Interface" (CAN-PRIME) study will be performed by the University Health Network (UHN) hospital at its Toronto Western Hospital.
CAN-PRIME will assess the safety of Neuralink's N1 implant and R1 surgical robot, used to place each of the 64 threads of the N1 implant into a patient's brain.
That same month, the company announced on X that it received approval to launch a feasibility study, CONVOY, which will test its wireless BCI, or N1 implant, to control an investigational assistive robotic arm.
Neuralink also offers an experimental implant, Blindsight, which received FDA breakthrough device designation in September. The device implants a microelectrode array into the visual cortex of a person's brain. The array then activates neurons, providing the individual with a visual image.
Tags: Neuralink, brain computer interface, als treatment, ALS