Abstract B106: Sexual orientation and gender identity data in oncology: Themes from a large qualitative study

Abstract Sexual orientation and gender identity (SOGI) data are vital but inconsistently collected among cancer centers. Approximately 9.3% of the U.S. population identifies as lesbian, gay, bisexual, queer, and intersex (LGBTQI), a group disproportionately burdened by cancer risk factors, inadequate cancer screening, treatment-related side effects, and inferior cancer-related outcomes. This study aimed to explore themes from a large set of interviews regarding the collection of SOGI data in oncology practice. Sixty-two semi-structured interviews across 23 cancer centers in the U.S. were conducted from February 2023 to December 2023. Interview transcripts were transcribed and double coded using emergent, inductive coding. Key themes included: (1) barriers to SOGI data collection such as stigma and bias, generational and geopolitical resistance, fragmented workflows, competing priorities and institutional inertia; (2) the importance of staff exposure to LGBTQI individuals in understanding SOGI’s clinical relevance; and (3) structural challenges to equitable care for transgender patients, including Electronic Health Record (EHR) limitations and billing issues. Taken together, these findings reveal a complex interplay of sociocultural, institutional, and systemic barriers that impede routine SOGI data collection in cancer care. Across the largest known data set examining SOGI data collection in oncology practice, there were clear differences in attitudes and comfort regarding SOGI data collection based on geopolitical location and generation, heterogeneous training to prepare staff for collection of these data, and an evolving sense of the importance of SOGI data to oncology practice. Institutions should provide clear guidance for implementation, and ensure that staff have the necessary time, training and resources to incorporate these practices into their workflows. Citation Format: Beck O. Gold, Charles Kamen, Dana Rosenberg, Megan A. Mullins, Milena Insalaco, Edward J. Miech, Mandi L. Pratt-Chapman. Sexual orientation and gender identity data in oncology: Themes from a large qualitative study [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B106.

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Publication Details

Journal
Cancer Epidemiology Biomarkers & Prevention
Published
2025-09-18
DOI
https://doi.org/10.1158/1538-7755.disp25-b106
Primary Topic
Economic and Financial Impacts of Cancer
Type
article
Field-Weighted Citation Impact
0.00
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article

Abstract B106: Sexual orientation and gender identity data in oncology: Themes from a large qualitative study

Mandi L. Pratt‐Chapman, D Rosenberg, Charles Stewart Kamen, Edward J. Miech et al.
Cancer Epidemiology Biomarkers & Prevention
Economic and Financial Impacts of Cancer
article

Abstract B106: Sexual orientation and gender identity data in oncology: Themes from a large qualitative study

Mandi L. Pratt‐Chapman, D Rosenberg, Charles Stewart Kamen, Edward J. Miech, Megan A. Mullins, Beck O. Gold, Milena E. Insalaco
article en

Abstract

Abstract Sexual orientation and gender identity (SOGI) data are vital but inconsistently collected among cancer centers. Approximately 9.3% of the U.S. population identifies as lesbian, gay, bisexual, queer, and intersex (LGBTQI), a group disproportionately burdened by cancer risk factors, inadequate cancer screening, treatment-related side effects, and inferior cancer-related outcomes. This study aimed to explore themes from a large set of interviews regarding the collection of SOGI data in oncology practice. Sixty-two semi-structured interviews across 23 cancer centers in the U.S. were conducted from February 2023 to December 2023. Interview transcripts were transcribed and double coded using emergent, inductive coding. Key themes included: (1) barriers to SOGI data collection such as stigma and bias, generational and geopolitical resistance, fragmented workflows, competing priorities and institutional inertia; (2) the importance of staff exposure to LGBTQI individuals in understanding SOGI’s clinical relevance; and (3) structural challenges to equitable care for transgender patients, including Electronic Health Record (EHR) limitations and billing issues. Taken together, these findings reveal a complex interplay of sociocultural, institutional, and systemic barriers that impede routine SOGI data collection in cancer care. Across the largest known data set examining SOGI data collection in oncology practice, there were clear differences in attitudes and comfort regarding SOGI data collection based on geopolitical location and generation, heterogeneous training to prepare staff for collection of these data, and an evolving sense of the importance of SOGI data to oncology practice. Institutions should provide clear guidance for implementation, and ensure that staff have the necessary time, training and resources to incorporate these practices into their workflows. Citation Format: Beck O. Gold, Charles Kamen, Dana Rosenberg, Megan A. Mullins, Milena Insalaco, Edward J. Miech, Mandi L. Pratt-Chapman. Sexual orientation and gender identity data in oncology: Themes from a large qualitative study [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B106.

Cancer Epidemiology Biomarkers & PreventionVol. 34(9_Supplement)
Simmons University (US), George Washington University (US), University of Rochester Medical Center (US)
Openalex Percentile: Top 66%
Economic and Financial Impacts of Cancer
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