Sexual Orientation and Gender Identity Data Collection in Oncology Practice: Findings of an ASCO Survey

Abstract

PURPOSE: Lack of collection of sexual orientation and gender identity (SOGI) data in oncology practices limits assessment of sexual and gender minority (SGM) cancer patients' experiences and restricts opportunities to improve health outcomes of SGM patients. Despite national calls for routine SOGI data collection, individual-level and institutional barriers hinder progress. This study aimed to identify these barriers in oncology. METHODS: An online survey of ASCO members and others assessed SOGI data collection in oncology practices, institutional characteristics related to SOGI data collection, respondents' attitudes about SOGI data and SGM patients, and respondent demographics. Logistic regression calculated adjusted odds ratios (ORs) and 95% CIs for factors associated with sexual orientation (SO) and gender identity (GI) data collection. RESULTS: Less than half of 257 respondents reported institutional SO and GI data collection (40% and 46%, respectively), whereas over a third reported no institutional data collection (34% and 32%, respectively) and the remainder were unsure (21% and 17%, respectively). Most respondents felt that knowing both SO and GI was important for quality care (77% and 85%, respectively). Collection of SO and GI was significantly associated in separate models with leadership support (ORs = 8.01 and 6.02, respectively), having resources for SOGI data collection (ORs = 10.6 and 18.7, respectively), and respondents' belief that knowing patient SO and GI is important (ORs = 4.28 and 2.76, respectively). Themes from qualitative comments mirrored the key factors identified in our quantitative analysis. CONCLUSION: Three self-reinforcing factors emerged as critical drivers for collecting SOGI data: leadership support, dedicated resources, and individual respondents' attitudes. Policy mandates, implementation science, and clinical reimbursement are strategies to advance meaningful data collection and use in clinical practice.

Transgender Individuals and Digital Health

“…The Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) currently require electronic health record (EHR) systems to include the ability to record gender identity and sexual orientation for patients [ 19 ]; however, institutional implementation is often hampered by inconsistent medical terminology standards and clinical systems that do not meaningfully address sex and gender diversity [ 15 , 20 , 21 ]. In addition, providers’ discomfort asking these questions, and lack of training and resources further limit an accurate collection of these data [ 22 , 23 ]. In the absence of a two-step question, health facilities can leverage electronic health record (EHR) content to improve identification of TGD people.…”

Breast Cancer Diagnosis, Treatment, and Outcomes of Patients From Sex and Gender Minority Groups

“…Only 24% of National Cancer Institute Community Oncology Research Program practice groups capture data on sexual orientation, and only 10% capture data on gender identity . A 2022 survey of American Society of Clinical Oncology members found that although more than 75% of respondents agreed that knowing sexual orientation and gender identity (SOGI) data is important to providing high-quality care, less than half of them reported collection of SOGI data at their institution . Even within the SGM literature, women who have sex with women (WSW) and transgender patients are understudied.…”

“…1 A 2022 survey of American Society of Clinical Oncology members found that although more than 75% of respondents agreed that knowing sexual orientation and gender identity (SOGI) data is important to providing highquality care, less than half of them reported collection of SOGI data at their institution. 2,3 Even within the SGM literature, women who have sex with women (WSW) and transgender patients are understudied. Of studies funded by the National Institutes of Health that focus on patients from SGM groups, only 13.5% include data on WSW, and just 6.8% include data on transgender patients.…”

A Learning Health System Approach to Cancer Survivorship Care Among LGBTQ+ Communities

“…1,2 Such health disparities affecting LGBTQ1 communities may additionally be underevaluated as a result of nonuniversal collection of sexual orientation and gender identity (SOGI) data. 3 Although the Affordable Care Act, for example, expanded health insurance coverage to millions of Americans, including those within the LGBTQ1 community, assessing the actual rates of insurance coverage among the LGBTQ1 community remains difficult as SOGI data collection is not yet universal and is inconsistent in federal and state data sources. 1,4 This lack of universal SOGI data collection contributes to a still-limited understanding of the full breadth of health disparities experienced by LGBTQ1 individuals.…”