Operationalizing the Definition of Intellectual and Developmental Disabilities in Administrative Claims Data for Research

The existence of multiple operational definitions for intellectual and developmental disabilities (ID/DD) in analyzing administrative claims data for health services and public health research limits translation of study findings to inform policies, programs, and practice. ASPE commissioned RTI International to conduct an environmental scan and comparative analysis across peer-reviewed literature and government sources of operational definitions using administrative claims data to identify the ID/DD population in health services research. RTI also interviewed authors of selected peer-reviewed articles, clinical practice experts, and experts from the U.S. Department of Health and Human Services to understand the rationale and implications for potential inclusion or exclusion of certain conditions in an ID/DD population definition in administrative claims for research.

The literature review and environmental scan identified diagnosis groups and specific conditions that are used inconsistently in the operationalization of ID/DD in health services research using administrative claims data. Interviews with researchers and clinical experts in ID/DD revealed different concepts of ID/DD and several major considerations that could inform the operationalization of ID/DD in claims-based research.

This research was conducted under contract between HHS/ASPE’s Office of Behavioral Health, Disability, and Aging Policy (BHDAP) and Research Triangle Institute. Additional research in this area is available at the ASPE Aging & Disability page and the ASPE Data page.

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Available Reports:

• Operationalizing the Definition of Intellectual and Developmental Disabilities in Administrative Claims Data for Research 

Related Resources:

• Improving Data Infrastructure for Patient-Centered Outcomes Research for People with Intellectual and Developmental Disabilities (2022)
• Considerations for Building Federal Data Capacity for Patient-Centered Outcomes Research Related to Intellectual and Developmental Disabilities (2021)
• COVID-19 Data on Individuals with Intellectual and Developmental Disabilities (2021)