Administrative Supplements for the P30 Cancer Center Support Grants to Enhance Sexual Orientation and Gender Identity (SOGI) Data Collection

摘要

Abstract Compared to heterosexual and cisgender populations, SGM populations face disparities related to cancer occurrence and outcomes, including barriers in cancer prevention, treatment, and survivorship care, and significant disparities in cancer risk factors. Despite these disparities, SGM cancer research is hampered by a lack of sexual orientation and gender identity (SOGI) data collection in clinical settings and in population-based surveillance data (especially cancer registries), and as a result, incidence, and mortality trends for SGM populations are difficult to document. The National Academies of Science, Engineering, and Medicine recently recommended that the NIH adopt standardized and parsimonious practices for collecting data on sex, gender, and sexual orientation to address these challenges. The USC/Norris Comprehensive Cancer Center (NCCC) adopted standardized data collection for SOGI during 2018 across its data systems (at the central hospital and outlying clinics), but those data are collected in optional forms in a “Social/Sexual History” tab, and to date there has been no effort to determine how complete or representative those data are. NCCC evaluates and treats cancer patients from Los Angeles County’s safety net hospital (LAC/USC), which also adopted voluntary collection of SOGI data fields in 2018. Provider training in the existence and use of SOGI data items has been provided on an ad hoc basis. To evaluate the potential utility of these data in advancing SGM research across the cancer continuum, we propose the following Specific Aims: Aim 1. Study the implementation of standardized SOGI data collection at NCCC Aim 2. Assess patient-, provider-, and clinic/organizational-level barriers and facilitators toward implementation of standardized SOGI data collection by surveying patients who did, and did not, answer SOGI questions. Aim 3. Link LAC/USC and USC/Norris records to the Los Angeles Cancer Surveillance Program (LA’s SEER Registry) and describe the intersection of patient-reported SOGI data items and Registry-based gender (Male/Female/Other/Unknown) values, as well as the burden of common cancers among gender minority cancer patients, comparing incidence, stage of disease, and survival of those patients whose SOGI was misclassified in the Registry. Aim 4. Pilot and evaluate provider training in SOGI data collection. Our ultimate goal will be to document implementation processes and identify and pilot viable solutions to support full integration and use of standardized SOGI data collection in the clinical setting to support surveillance and research. By linking data with the LA SEER registry, we will be able to document the need for including SOGI data collection in population-based cancer registries and begin to track outcomes for SGM individuals on a population basis.