HIPAA Protections for Responsible SOGI Data Stewardship

LGBTQ+ individuals, like all people, deserve comprehensive, accessible, high-quality health care delivered by practitioners and providers they can trust. Accurate and trustworthy SOGI (sexual orientation and gender identify) data—along with other demographic data such as race, ethnicity and primary language—is the cornerstone of efforts to innovate and improve care delivery, identify and overcome barriers to equity, train service providers, evaluate the effectiveness of interventions and participate in research that improves both population health and individual patient outcomes.  

This issue brief discusses long-standing protections for patient or member data, including SOGI data, provided by HIPAA and a 2024 final rule from the U.S. Department of Health and Human Services clarifying health care and health insurance nondiscrimination protections.  

The issue brief covers:  

• The regulations outlined in the 2024 final rule from HHS.  

• Why understanding these regulations is important for health care organizations.  

• How health care organizations can act to better serve the LGBTQ+ community.  

• Resources to further understanding of the new rule and other relevant legislation.  

This issue brief was jointly developed by NCQA and Whitman-Walker.