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

Publication Date
Mithuna Srinivasan, Frances Jiménez, Avantika Shah, Rachel Kane, Madjid Karimi, & Prashila Dullabh

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.

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