How Interoperability, HIE Can Boost Equity for Patients with Disabilities

ONC is working to boost health equity for patients with intellectual and developmental disabilities (IDD) through various interoperability and health information exchange (HIE) initiatives, according to a HealthITBuzz blog post written by ONC officials Seth Pazinski, Lauren Richie, and Kim Lundberg.

According to the Centers for Disease Control and Prevention (CDC), IDD are a group of conditions due to an impairment in physical, learning, language, or behavior areas such as:

• Autism spectrum disorders
• Cerebral palsy
• Attention-deficit/hyperactivity disorder
• Learning or intellectual disabilities
• Hearing loss
• Vision impairment
• Other developmental delays

These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.

The ONC officials said health equity, care coordination, and information sharing are critical to the IDD community.

“Well-coordinated care across both health and social sectors is imperative for individuals with IDD, a complex population that experiences poorer health and has higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions,” Pazinski, Richie, and Lundberg wrote.

Individuals with IDD often see multiple clinical specialists regularly. These specialists can include speech/language pathologists, occupational therapists, behavioral therapists, physical therapists, neurologists, nutritionists, audiologists, and cardiologists.

The officials also noted that individuals with IDD often leverage social services outside of the healthcare sphere, including group homes, private therapy practices, schools, camps, and home- and community-based services. Health information sharing with these organizations can help ensure care coordination across the healthcare and social service sectors. 

Most hospitals and clinicians use software certified by ONC’s Health IT Certification Program. The ONC Cures Act Final Rule requires certified health IT developers to adopt the US Core Data for Interoperability (USCDI), a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange.

The officials noted that the deadline for certified health IT developers to update their offerings to support USCDI version 1 is December 31, 2022.

ONC published USCDI version 2 in July 2021, which added four social determinants of health (SDOH) data elements to help identify and address needs in domains such as food, housing, and transportation insecurity.

ONC also recently published Draft USCDI version 3, which proposes data elements in a new data class, health status.

The officials said that these data elements include disability status and mental function, representing an advancement for health IT that can help improve care and address inequities. The Draft USCDI version 3 is available for public feedback until April 30, 2022.

“ONC is dedicated to diversity, equity, inclusion, and accessibility (DEIA) efforts,” Pazinski, Richie, and Lundberg wrote. “Individuals with intellectual and developmental disabilities are represented across every race, gender, and age, and often need a healthcare advocate.”

“While there is still much work for our nation to do in addressing the dreams, goals, healthcare, and needs of individuals with IDD, we know that health IT can be used to help each person attain their full health potential,” they concluded.