Language
English
Publication Date
7-1-2025
Journal
Journal of the National Cancer Institute Monographs
DOI
10.1093/jncimonographs/lgaf013
PMID
40671548
PMCID
PMC12268163
PubMedCentral® Posted Date
7-17-2025
PubMedCentral® Full Text Version
Post-print
Abstract
This brief report describes takeaways from the implementation of sexual orientation and gender identity (SOGI) data collection within a matrix comprehensive cancer center. Implementation of standardized and parsimonious SOGI data collection practices is a strategy recommended to improve our understanding of the cancer experiences among sexual and gender minority (SGM) populations. However, interventions are rarely sustained in routine practice without an organized program to support their implementation. We used a stakeholder-engaged approach to integrate a SOGI questionnaire in the electronic health record (EHR) at Dan L Duncan Comprehensive Cancer Center (DLDCCC)-affiliated adult oncology clinics and evaluate its feasibility, acceptability, and utilization among providers and staff. In Phase 1, we convened a Stakeholder Advisory Board (SAB) for this project comprising leadership, providers, and members of the LGBTQ+ community. Through focus groups held over a 12-month period, the SAB defined barriers and facilitators to SOGI data collection and determined strategies to support the sustained implementation of SOGI data collection in oncology clinics. In Phase 2, we assessed the acceptability and feasibility of SOGI data collection among providers and staff. Semistructured interviews showed that key stakeholders perceived SOGI data collection as highly acceptable and feasible. These stakeholders perceived that SOGI data collection may improve clinical decision-making and help provide better patient-centered care to sexual and gender minorities. Barriers at multiple ecological levels hinder routine SOGI data collection. Bundling SOGI data collection implementation with other institutional initiatives was a successful strategy for our partner institution. Implementation strategies focused on provider and staff education. SOGI data collection is highly acceptable among stakeholders in DLDCCC-affiliated adult oncology clinics.
Keywords
Humans, Gender Identity, Male, Female, Sexual and Gender Minorities, Stakeholder Participation, Sexual Behavior, Cancer Care Facilities, Surveys and Questionnaires, Adult, Data Collection, Electronic Health Records, Neoplasms, Focus Groups
Published Open-Access
yes
Recommended Citation
Parker, Susan L; Ayala-Ramirez, Montserrat; Montealegre, Jane R; et al., "Implementing a Stakeholder-Informed Approach for Standardized Collection of Sexual Orientation and Gender Identity Data: Lessons Learned at a Matrix Comprehensive Cancer Center" (2025). Faculty, Staff and Students Publications. 7705.
https://digitalcommons.library.tmc.edu/baylor_docs/7705