Assessment of Real-World Data Elements Describing Social Determinants of Health in Outcomes Research in the United States: An ISPOR Special Interest Group Report.

Authors

Louise Hartley, Barbara Johnson, Deborah Profant, Gediwon Milky, Craig Meyer, Amiee Kang, Lixia Yao, Phani Veeranki

Published in

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research. Nov 10, 2026. Epub Nov 10, 2026.

Abstract

To identify social determinants of health (SDoH) used in real-world data (RWD) studies in the United States and characterize the frequency of SDoH elements in RWD in the US.
A targeted literature review guided by the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework was conducted. Studies published between 01/01/2022-12/31/2023 were identified from multiple bibliographic databases. Articles meeting inclusion/exclusion criteria were screened independently by two reviewers. Discrepancies were resolved by a third reviewer. Data extraction summarized individual-level SDoH elements across sociocultural, behavioral, physical/built environment, and healthcare systems.
Among 43 studies included, 26 (60%) used survey data, 6 (14%) used multiple sources, 4 (9.3%) registries, 2 (4.7%) electronic-health records, 1 (2.3%) administrative claims, and 4 (9.3%) other. Demographics including age (86%), race (91%), sex (93%) and social economic status (SES) (98%) were frequently reported, while ethnic origin, immigration status and gender identity were underreported with over 80% of studies not including these data. Housing status and environment were absent in 91% and 67% of the included studies. Behavioral factors (tobacco, alcohol, drug use) were omitted in 77-88% of selected articles. Health insurance status was reported in half (49%) of the included studies, whereas type of insurance was absent in 67% of the included studies.
While core demographics are commonly captured in US RWD, critical SDoH domains are frequently missing. Standardized SDoH frameworks and systematic collection across RWD sources are needed to improve completeness and advance health equity research.

PMID:
43009098
Bibliographic data and abstract were imported from PubMed on 11 Nov 2026.

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