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

Megan A Mullins; Lisa Reber; Ariel Washington; Marina Stasenko; Aaron Rankin; Christopher R Friese; Mary E Cooley; Matthew F Hudson; Lauren P Wallner

doi:10.1002/cam4.6517

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

Cancer Med. 2023 Sep;12(18):19203-19214. doi: 10.1002/cam4.6517. Epub 2023 Sep 21.

Authors

Megan A Mullins^{1

2}, Lisa Reber¹, Ariel Washington³, Marina Stasenko⁴, Aaron Rankin⁵, Christopher R Friese^{6

7}, Mary E Cooley⁸, Matthew F Hudson⁹, Lauren P Wallner^{5

7}

Affiliations

¹ Peter O'Donnell Jr. School of Public Health, UT Southwestern Medical Center, Dallas, Texas, USA.
² Harold C. Simmons Comprehensive Cancer Center, UT Southwestern Medical Center, Dallas, Texas, USA.
³ Karmanos Cancer Institute, Department of Oncology, Wayne State University School of Medicine, Detroit, Michigan, USA.
⁴ Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, NYU Langone Health, New York, New York, USA.
⁵ Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, USA.
⁶ Center for Improving Patient and Population Health, University of Michigan, Ann Arbor, Michigan, USA.
⁷ Rogel Cancer Center, University of Michigan, Ann Arbor, Michigan, USA.
⁸ Phyllis F. Cantor Center, Research in Nursing and Patient Care Services, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
⁹ Prisma Health Cancer Institute Greenville South Carolina, Greenville, South Carolina, USA.

Abstract

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.

Keywords: clinical cancer research; clinical guidelines; epidemiology; psychosocial studies.

Abstract

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