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

TL;DR

This study explores the challenges of collecting sexual orientation and gender identity data in cancer care through interviews with healthcare professionals.

Contribution

The study identifies new thematic insights into barriers and facilitators for collecting SOGI data in oncology settings.

Findings

Barriers to SOGI data collection include stigma, resistance, and fragmented workflows.

Staff exposure to LGBTQI individuals is crucial for understanding SOGI's clinical relevance.

Structural challenges like EHR limitations and billing issues hinder equitable care for transgender patients.

Abstract

Sexual orientation and gender identity (SOGI) data are vital, but inconsistently collected among cancer centers.

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.

Oncology care settings in diverse geopolitical regions in the United States.

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.

We used inductive, open coding thematic qualitative analysis with no predetermined constructs.

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.