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

摘要 与异性和顺性别人群相比，SGM人群面临着与癌症有关的差异 发生和结果，包括癌症预防、治疗和生存护理方面的障碍，以及 癌症危险因素的显著差异。尽管存在这些差异，SGM癌症研究仍受到 临床环境和人群中缺乏性取向和性别认同(SOGI)数据收集 监测数据(特别是癌症登记)，因此，SGM的发病率和死亡率趋势 人口很难记录在案。美国国家科学院、工程院和医学院最近 建议美国国立卫生研究院采取标准化和节俭的做法，收集关于性、性别、 和性取向来应对这些挑战。南加州大学/诺里斯综合癌症中心(NCCC) 2018年为SOGI的数据系统(在中心医院和 边远诊所)，但这些数据是以可选的形式在“社会史/性史”选项卡中收集的，并且到目前为止 一直没有努力确定这些数据的完整性或代表性。NCCC评估和治疗 洛杉矶县安全网医院(LAC/USC)的癌症患者也采用了自愿 2018年SOGI数据字段收集。供应商对SOGI数据项的存在和使用进行了培训 在临时基础上提供。为了评估这些数据在推动SGM研究方面的潜在效用 对于癌症的连续体，我们提出了以下具体目标： 目的1.研究NCCC标准化SOGI数据采集的实施情况 目标2.评估患者、提供者和诊所/组织层面的障碍和促进者 通过调查回答和不回答SOGI的患者来实施标准化的SOGI数据收集 问题。 目标3.将LAC/USC和USC/Norris记录与洛杉矶癌症监测计划(LA‘s SEER)联系起来 注册)，并描述患者报告的SOGI数据项和基于注册的性别的交集 (男性/女性/其他/未知)价值观，以及性别少数癌症中常见癌症的负担 患者，比较SOGI分类错误的患者的发病率、疾病阶段和存活率 在注册处。 目标4.试行和评估SOGI数据收集方面的提供商培训。 我们的最终目标将是记录实施流程，并确定和试行可行的解决方案以支持 在临床环境中完全集成和使用标准化的SOGI数据收集，以支持监测和 研究。通过将数据与洛杉矶SEER登记处联系起来，我们将能够记录纳入SOGI的必要性 在以人群为基础的癌症登记中收集数据，并开始跟踪SGM个人在 以人口为基础。

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.