SDOH Data as Health Care Data: The Multifaceted, Evolving, and Consequential Role of Law and Policy

Social determinants of health (SDOH) are increasingly recognized as vital factors shaping health outcomes in the United States. With escalating integration of SDOH data into health information platforms, questions arise about appropriate regulation to both enable data-driven care and protect against potential harms. This article reviews the current regulatory landscape governing SDOH data within the US health care system, with an emphasis on identifying critical tensions, policy strategies, and gaps salient for policymakers, practitioners, and researchers.

We conducted a scan to identify federal and state regulatory activity pertaining to SDOH data within the health care contexts. We synthesized these sources to map the current landscape and tease out emerging themes.

We identified 3 core areas of relevant regulation: (1) data standardization, interoperability, and exchange; (2) information privacy and security; and (3) oversight of advanced analytics, including artificial intelligence applications. Authorities actively wrestle with several key regulatory design questions, including: (1) whether to treat SDOH data created, collected, maintained, and used in or by health care settings in the same way as any other type of health information; (2) effective levers to promote desired policy outcomes; and (3) the rightsized jurisdictional balance between federal and state enforcement. Variations in decisions at these crossroads are entrenching the health care system in a scenario in which SDOH data exchange is more clearly part of the new standard of care in some states than others, and in which SDOH data is more protected in some states than others.

Findings speak to the importance of cultivating a regulatory environment for SDOH data within the health care sector that is not only responsive to the current realities of the field but also responsive to rapid evolution and resilient to future challenges.