Enhancing Sexual Orientation and Gender Identity Data Collection across the Duncan Cancer Center

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PROJECT SUMMARY A poll published in February 2022 reported that 7.1% of US adults self-identify as LGBTQ, up from 4.1% in a similar poll in 2016. Additionally, the percentage varied by age with 2.6% among Baby Boomers and 20.8% of Generation Z. The American Cancer Society estimates that there will be more than 1.9 million new cancer diagnoses in the US in 2022, and more than 600,000 people will die from their cancer. “Back of the envelope” calculations would, therefore, estimate that 135,000 LGBTQ Americans will be diagnosed with cancer this year and more than 40,000 will die from their cancer. However, these estimates are not based on empirical data because cancer registries do not collect data on sexual orientation and gender identity (SOGI). Further, many cancer centers do not collect these data for clinical or research uses. While studies have shown that certain cancer risk factors such as alcohol use, tobacco use, obesity, and oncogenic viral infection are more prevalent amongst SGM individuals, we do not currently have the data to understand the risk factors that are unique among LGBTQ individuals nor what factors contribute to their cancer survivorship experience. The overarching goal of this supplement is to use a stakeholder-engaged approach to integrate a SOGI questionnaire in the electronic medical record at Dan L. Duncan Comprehensive Cancer Center (DLDCCC)-affiliated clinics and evaluate its feasibility, acceptability, and utilization among patients and providers. We will pursue the following specific aims: Aim 1: a) To understand contextual barriers and facilitators to routine of SOGI data collection in DLDCCC hospitals; and b) to use participatory approaches to identify and adapt implementation strategies (i.e., SOGI training and SGM-inclusive messaging and resources in the healthcare setting) to support the routine collection of SOGI data in the electronic medical record. Aim 2: a) To determine the rate of SOGI data assessment, response, and quality after incorporating a SOGI questionnaire in the electronic medical record in DLDCCC hospitals; and b) to evaluate how these indicators are affected by the implementation of SOGI training and SGM- inclusive messaging and resources in the clinics. Aim 3: a) To assess the feasibility and acceptability of routine SOGI data collection among DLDCCC patients, oncology providers, and staff; 2) to assess the feasibility and acceptability of SOGI training among DLDCCC oncology providers and staff.