Abstract IA016: Best practice strategies for SOGI data collection: Lessons learned from conducting and implementing the Ask SOGI study
Authors: Kano Miria , Guest Dolores , Pearson Amy Farnbach , Kosich Mikaela , Jacobson Kendal A. , Mishra Shiraz , Sussman Andrew , Tawfik Bernard , Dayao Zoneddy , Scout NFN , Willging Cathleen 
Published: December 2023

Background: Collection of reliable data on Sexual Orientation and Gender Identity (SOGI) is essential for improving cancer care for Sexual and Gender Minority (SGM) populations that experience health disparities. To address gaps in reliable SOGI data collection, the National Cancer Institute (NCI) funded a series of awards to enhance sexual orientation and gender identity (SOGI) data collection at cancer centers. In August 2022, we launched the “We Ask Because We Care: Enhancing Sexual Orientation and Gender Identity Data Collection in New Mexico Cancer Center” (Ask SOGI) research intervention at the University of New Mexico Comprehensive Cancer Center (UNMCCC). Methods: Our research team used a mixed methods framework that included a cancer center-wide readiness assessment survey and focus groups to: 1) identify potential barriers to the systematic collection of patient SOGI data, incorporate National Academy of Science Engineering Medicine (NASEM) recommended SOGI measures into the UNMCCC Electronic Health Records; 2) tailor future staff/provider-cultural competency/cultural humility educational interventions, and 3) design a patient-facing “We Ask Because We Care” campaign to encourage welcoming and comfortable care for SGM patients and their informal cancer caregivers.  Results: Although the study is on-going, initial survey findings suggest that staff and provider concerns regarding the appropriate method and time for asking patients about their SOGI may inhibit data collection at the cancer center. Respondents desired cancer center led education and training for staff and faculty that would include appropriate points and methods for SOGI data collection, demonstrations of SOGI integration and utilization into the electronic health record, and strategies to encourage conversational confidence so staff and providers can engage patients and their caregivers in sensitive topics. Moreover, SGM patients and caregiver focus group participant reviewers of the emerging “We Ask Because We Care” campaign were positive about the visual images, and acknowledged the importance of such efforts for creating affirmative spaces for SGM persons experiencing cancer. Conclusion: Interventions that address multilevel staff and provider, as well as patient and caregiver concerns regarding discussions of sexual orientation and gender identity data collection may increase more consistent collection of SOGI data that can be used to enhance cancer care and health disparities research.

Citation Format: Miria Kano, Dolores Guest, Amy Farnbach Pearson, Mikaela Kosich, Kendal A. Jacobson, Shiraz Mishra, Andrew Sussman, Bernard Tawfik, Zoneddy Dayao, NFN Scout, Cathleen Willging. Best practice strategies for SOGI data collection: Lessons learned from conducting and implementing the Ask SOGI study [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr IA016.