Sexual orientation and gender identity data collection in healthcare: A scoping review of literature

Accurate collection of sexual orientation and gender identity (SOGI) data is increasingly recognized as essential for equitable healthcare delivery. However, practices remain inconsistent, and the implications for patient care, research, and health system accountability are not well synthesized. This review aimed to map the existing literature on the collection and use of sexual orientation and gender identity data in healthcare, identifying current practices, applications, limitations, and recommendations. A scoping review methodology was employed, following established guidelines. Sixty-two peer-reviewed studies were identified through systematic database searching and screening. Data were extracted on sexual orientation and gender identity measures, collection processes, and reported uses in clinical care, research, equity monitoring, or service planning. Sexual orientation and gender identity data were most often collected through electronic health record (EHR) fields, though methods varied widely, with some studies relying on billing codes or proxy indicators. Parameters typically included sex assigned at birth, gender identity, pronouns, and sexual orientation, though these were not consistently elicited. Uses of sexual orientation and gender identity data included informing clinical care, monitoring equity, supporting research, and meeting policy mandates. Key limitations included incomplete capture, inconsistent terminology, reliance on proxy measures, and patient or provider discomfort with disclosure. Recommendations emphasized patient self-report, updated electronic health record design, provider training, and transparent communication about data use. Sexual orientation and gender identity data collection is advancing but remains fragmented and inconsistently implemented. Improving technical systems, fostering inclusive clinical environments, and centering patient agency are essential to ensure that sexual orientation and gender identity data function not only as administrative metrics but as tools for equity and person-centered care.