Abstract B092: ‘We’ve got to go to the doctor and we’re scared to death’: Community members perspectives on sexual orientation and gender identity data collection in healthcare settings
Authors: Washington Ariel , Fakih Ali , Toman Lindsey , Ayoub Riham , Noble Emma , Musto Susan , Dowe Brittany , Ellis Scott , Sakleh Andrea , Thompson Hayley S. , Riddle-Jones Latonya 
Published: September 2024

Purpose: Much research is needed to advance our knowledge of LGBTQ cancer disparities, but research is hindered by inconsistency in collection of data on sexual orientation and gender identity (SOGI) across clinical and research settings. Nationally, there have been increased efforts to standardize SOGI data collection. The purpose of this study was to identify potential patient-level barriers and facilitators to SOGI data collection within the catchment area of a midwestern cancer center. Methods: Investigators conducted 4 focus groups in partnership with community-based organizations and stakeholder groups that reflected the catchment area’s diverse populations. Using a semi-structured approach, participants were asked about their experiences with SOGI data collection, barriers and facilitators to this collection, and how they viewed the practice of collecting SOGI data. Focus groups were audio recorded and transcribed. Data was coded and interpreted using applied thematic analysis. Results: Four focus groups were conducted with 32 participants in total. There were 2 LGBTQ groups (one mixed race/ethnicity, one African American), and 2 predominantly non-LGBTQ groups (one African American and one Middle Eastern/North African or MENA). Across all participants, 53% were African American (n=17), 25% identified as MENA (n=8), 28% were White (n=9), 44% of the participants identified as women (n=19), one individual identified as a transgender woman & 2 individuals as non-binary, and 53% reported their sexual orientation as gay/lesbian/same-loving. In all groups, participants emphasized a need to educate both patients and providers about the importance of SOGI data collection, why it is collected, and its relevance to improving medical care. Participants further discussed the quality and depth of the patient-provider relationship as a critical factor in a patient’s comfort and willingness to share SOGI data. Participants also underscored the importance of privacy ownership (i.e., the ownership of one’s own private information) and control in relation to SOGI status, and the desire to minimize potential privacy turbulence of an unexpected and unwelcome disclosure breach. All groups discussed how the potential for harm resulting from SOGI disclosure could deter patients from sharing SOGI information. Those who identified as LGBTQ, recounted both personal experiences and the experiences of others in which disclosure of SOGI information directly led to poor treatment by a healthcare professional. It is this potential for harm and discrimination that led many participants to stress the need for privacy control until a safe environment is established. Conclusions: Findings highlight a number of potential patient barriers to SOGI data collection from community members’ perspectives, including the need for widespread education on this topic and clinical environments in which patients are safe disclosing SOGI status. Future research and practice should consider specific methods to normalize the practice of SOGI data collection in the cancer care context.

Citation Format: Ariel Washington, Ali Fakih, Lindsey Toman, Riham Ayoub, Emma Noble, Susan Musto, Brittany Dowe, Scott Ellis, Andrea Sakleh, Hayley S. Thompson, Latonya Riddle-Jones. ‘We’ve got to go to the doctor and we’re scared to death’: Community members perspectives on sexual orientation and gender identity data collection in healthcare settings [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B092.