Sexual Orientation and Gender Identity Data in Oncology: Thematic Analysis From a National Qualitative Interview Study

Abstract

Importance: Sexual orientation and gender identity (SOGI) data are vital, but inconsistently collected among cancer centers. Objective: This study aims to identify themes from a large set of interviews regarding the collection of sexual orientation and gender identity (SOGI) data in oncology practice. Setting: Oncology care settings in diverse geopolitical regions in the United States. Participants: Sixty-two semi-structured interviews across 23 cancer centers in the United States were conducted from September 1, 2022 to August 31, 2023. Interview transcripts were transcribed and double-coded using thematic analysis and emergent coding. Main outcomes and measures: We used inductive, open coding thematic qualitative analysis with no predetermined constructs. Results: Key themes included: (1) barriers to SOGI data collection include stigma and bias, generational and geopolitical resistance, fragmented workflows, competing priorities and institutional inertia; (2) the importance of staff exposure to lesbian, gay, bisexual, queer, and intersex (LGBTQI) individuals in understanding SOGI's clinical relevance; and (3) structural challenges to equitable care for transgender patients, including electronic health record (EHR) limitations and billing issues. Taken together, these findings reveal a complex interplay of sociocultural, institutional, and systemic barriers that impede routine SOGI data collection in cancer care.