Improving Data Infrastructure for Intellectual and Developmental Disabilities

Brenda Akinnagbe; Madjid (MJ) Karimi and Emma Plourde | September 26, 2022

July 26, 2022, marked the 32nd anniversary of the Americans with Disabilities Act (ADA). In celebration of this landmark civil rights law, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) published a report called Improving Data Infrastructure for Patient-Centered Outcomes Research for People with Intellectual and Developmental Disabilities (IDD).

In 2017, there were 7.4 million individuals with IDD in the United States. Individuals with IDD often receive care in both traditional health care settings like hospitals, and in the community by providers like direct support professionals, behavioral therapists, and more. Although a range of health entities currently collect data on IDD, a lack of standardization at the point of care limits interoperability and subsequent health data exchange. Data infrastructure and standardization on IDD is essential to generate evidence to improve health care delivery.

With this in mind, ASPE’s report highlights the critical need to improve data capture at the point of care and other data infrastructure improvements. This includes the use of IDD specific data elements in clinical care, mechanisms and tools for capturing and documenting self-reported IDD status, and investigating machine learning or natural language processing techniques to capture IDD status information.

Improving Data Capture of IDD Status at Point of Care

ICD-10-CM diagnosis codes are the primary data elements used to identify the IDD population within electronic health records (EHRs). Complete and accurate collection of data on diagnoses requires each provider to document patient functional and disability status consistently in the EHR. Inconsistent diagnosis documentation can lead to vital data that are not captured in EHR-derived data sets as standardized data elements, such as ICD-10-CM codes.

The United States Core Data for Interoperability (USCDI), a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange, was updated on July 22, 2022, to USCDI version 3 (v3). USCDI v3 includes new data elements for Functional Status, Disability Status, and Mental/Cognitive Status. The inclusion of these data elements in the USCDI v3 is a critical step to advancing the standardized capture and exchange of data for people with disabilities, including individuals with IDD. A shared focus on these specific USCDI v3 data elements by health IT developers, health care providers, and innovators across care settings will help lead to solutions that can better support individuals with IDD.

Our Commitment to Data Infrastructure for IDD

Efforts by ASPE, ONC, and other federal partners aim to improve the standardized collection and exchange of health data relevant to the IDD population. Collaboration and stakeholder engagement are essential in order to develop data infrastructure that can generate evidence to inform decisions of individuals with IDD, providers, and policy makers to improve health. ONC is currently accepting new data element and class submissions and comments on existing data elements for Draft USCDI version 4 through September 30, 2022.

ASPE coordinates intradepartmental projects on behalf of the secretary of health and human services that build data capacity for patient-centered outcomes research (PCOR). This work is referred to as the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) portfolio, which is funded by Congress, established in 2010, and was reauthorized for another ten years in 2019. The reauthorization legislation identified IDD as a new research priority for the PCORTF. ASPE will continue to engage in activities (e.g., key informant interviews, technical expert panels, and listening sessions) to inform the development of the IDD PCORTF portfolio and support advancements in IDD data infrastructure.