Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices

• Published in: Cancer medicine (Malden, MA) MA), 2023-09, Vol.12 (18), p.19203-19214
• Main Authors: Mullins, Megan A., Reber, Lisa, Washington, Ariel, Stasenko, Marina, Rankin, Aaron, Friese, Christopher R., Cooley, Mary E., Hudson, Matthew F., Wallner, Lauren P.
• Format: Article
• Language: English
• Subjects: Cancer; clinical cancer research; clinical guidelines; Data collection; Electronic health records; Electronic medical records; epidemiology; Gender; Gender identity; Interviews; Medical research; Oncology; Participation; psychosocial studies; Qualitative research; Sexual behavior; Sexual orientation
• ISSN: 2045-7634; 2045-7634
• DOI: 10.1002/cam4.6517

Background Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)‐affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. Methods We conducted 14 semi‐structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. Results Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis‐heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. Conclusions SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.