Assessing Outcomes Relevant for Patient-Centered Outcomes Research Among Adults Aged 18–64 with Disabilities and Federal Data Infrastructure Opportunities

This report and dataset inventory identifies individual-level measures for conducting patient-centered outcomes research (PCOR) relevant to adults with disabilities, aged 18–64 years. The work identifies six broad outcome domains relevant to PCOR for this population from prior research, including: (1) social and community engagement; (2) choice and control; (3) employment and self-sufficiency; (4) privacy, rights, and human security; (5) health-related social needs; and (6) health and wellbeing. Additionally, it identifies 32 sources of measures across the domains that include standardized tools/instruments, routinely fielded surveys, and administrative datasets.

Related Products:

• Improving Data Infrastructure for Patient-Centered Outcomes Research for People with Intellectual and Developmental Disabilities
• Considerations for Building Federal Data Capacity for Patient-Centered Outcomes Research Related to Intellectual and Developmental Disabilities