Patient Sexual Orientation and Gender Identity Information Practices in Oncology

Sexual orientation and gender identity (SOGI) are rarely collected in clinical practice despite national calls to do so.

To explore what facilitators are associated with collection of SOGI data in oncology practice.

In this qualitative study with purposive sampling for greatest heterogeneity, semistructured interviews across 23 institutions were conducted in oncology practices in diverse geopolitical regions in the US from September 1, 2022, to August 31, 2023.

Interviews were transcribed, double coded using deductive coding based on the Consolidation Framework for Implementation Research, and inductively coded based on emergent themes.

Of 23 cancer centers, most were academic cancer centers (14 [61%]) and located in urban settings (17 [74%]); 7 sites (30%) sites systematically collected SOGI data, 11 (48%) partially collected SOGI data, and 5 (22%) did not collect SOGI data. A total of 62 interviews were conducted. Mean (SD) participant age was 46 (11) years; 26 (42%) identified as female. Facilitators associated with collection of SOGI data included external mandates, forced workflows in the electronic medical record, structured data fields, perception that SOGI data were relevant to clinical practice, and leadership support. Among sites that partially collected SOGI data, existence of champions, training for SOGI data collection, and perception of the relevance of SOGI to cancer care were facilitators associated with collection. Sites that systematically collected SOGI data offered more rigorous training on the importance of SOGI data collection for use in practice. Sites that did not collect SOGI data indicated that a mandate or top-down leadership requirement would likely be needed to catalyze SOGI data collection.

This qualitative study of implementation factors associated with SOGI data collection in outpatient oncology practices found that systematic SOGI data collection occurred in a few centers. Factors associated with SOGI data collection were multifaceted, involving both external mandates and internal factors. Despite the collection of SOGI data, their clinical use varied, suggesting a need for ongoing clinician education and development of strategies to improve the integration of SOGI data into patient care.