Sexual Orientation and Gender Identity Data Collection in Community Oncology Practice

University Of Rochester, Rochester NY

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Abstract

ABSTRACT This application is being submitted in response to the Notice of Special Interest (NOSI) identified as NOT-CA-23-032. This supplement’s goal is to characterize organizational and provider-level factors that differentiate community oncology practices that collect and use sexual orientation and gender identity (SOGI) data from those that do not. Sexual and gender minority people (SGM; e.g., lesbian, gay, bisexual, transgender, intersex, etc.) have received limited cancer research attention, in part because large-scale research efforts are hampered by lack of consistent collection of SOGI data in oncology practices. Oncology practices may not collect SOGI data due to organizational- and provider-level barriers, even though SGM cancer patients often want to disclose SOGI, disclosure of SOGI is correlated with better outcomes among SGM patients, and multiple national organizations recommend that oncology practices collect SOGI data as part of efforts to reduce SGM disparities. The NCI Community Oncology Research Program (NCORP) is the ideal network to assess factors leading to SOGI data collection in diverse oncology settings. In a survey of 271 NCORP practices in 2022, we found that less than half of practices (42%) were consistently collecting SOGI data. In a separate survey of 257 oncology providers supported by the American Society of Clinical Oncology (ASCO), we found that collection of SOGI data at an oncology practice was associated with leadership support, resources for data collection, and belief in the importance of collecting SOGI data. More detailed exploration of barriers and facilitators to SOGI data collection is needed to inform SOGI implementation interventions across diverse community oncology practices. In this study, we will use the Consolidated Framework for Implementation Research (CFIR) to assess implementation factors such as the geopolitical context of laws where NCORP practices are located that influence SOGI data collection (“Outer Setting”), the characteristics and contexts of the practices and providers (“Inner Setting” and “Individuals”), and strategies for implementing SOGI data within each practice’s clinical flow (“Innovation" and “Processes”). Building on strong preliminary data, we will purposively sample 16 NCORP practices diverse in geography, practice setting, and current SOGI data collection. We will complete 3 in-depth interviews at each practice, one each with a direct care provider (e.g., oncologist, nurse, advanced practice provider), an administrator, and a person responsible for intake data (e.g., front desk staff, IT specialist). Our specific aims are: 1) To assess which implementation factors are difference-makers in the collection and use of SOGI data in community oncology using qualitative thematic analysis and Boolean-logic-based configurational analysis, 2) To explore how SOGI data are collected in community oncology practices, with the goal of collating practice-driven recommendations for data collection, and 3) To explore how SOGI data are used in community oncology practices, with the goal of informing a future intervention to improve cancer care for SGM patients.