Implementing Sex, Sexual Orientation, and Gender Identity (SSOGI) Data Collection in Cancer Care (SSOGI Collect)

Northwestern University At Chicago, Evanston IL

Investigators

Linked publications, trials & patents

Abstract

PROJECT SUMMARY Sexual and Gender Minority (SGM) populations have higher levels of psychosocial distress and behavioral chronic disease risk factors compared to non-SGM populations. These factors can enhance the risk for a variety of chronic physical health conditions, including for cancer. While an increasing number of studies have documented cancer disparities affecting SGM populations, such studies have often had small sample sizes with recruitment limited to one health system or have recruited many participants online across a larger geographic area but have lacked objective measures of cancer risk factors and outcomes. These methodological limitations are directly attributable to the lack of high quality data capture of sex assigned at birth, gender identity, and sexual orientation (SSOGI) across surveillance, health system, and research data systems that monitor cancer. To achieve a paradigm shift in the rigor of SGM cancer studies, it is essential to add SSOGI measures to cancer data systems and to engage in targeted efforts to scale up SSOGI data collection. The Robert H. Lurie Comprehensive Cancer Center of Northwestern University (LCC) is one of the nation’s leading cancer centers. Based in the Northwestern Memorial Healthcare (NMHC) health system, LCC sees over 10,000 new cancer cases per year, including over 1,000 breast cancer cases annually. Within the NMHC EMR and registration system, LCC has established infrastructure to capture SSOGI data. In March 2019, the NMH system transitioned multiple hospitals in NM’s network to EPIC as a unified EMR platform. All hospitals using NM’s EPIC EMR system rolled out structured SSOGI data fields that could be completed by NM staff or by patients via NM’s online patient portal, MyChart or the phone app, MyNM. Since the EMR SSOGI question rollout, 8% of patients across the NMH system have SSOGI data on file. Our team of researchers, clinicians, informaticists, and quality leaders at LCC and NMH have expertise in SSOGI data collection and SGM health equity. We propose to accomplish the following specific aims in response to the NCI SSOGI administrative supplement call: Specific Aim 1: Use a mixed methods Define-Measure-Analyze- Improve-Control (DMAIC) quality improvement approach to identify barriers and facilitators for SSOGI data collection at the patient, provider, and organizational levels within LCC/NMHC sites. Specific Aim 2: Train LCC/NMH providers who see active cancer patients to administer SSOGI measures.Specific Aim 3: Use our team’s established methods and partnerships with analytics to A) monitor SSOGI data completeness and B) to develop and pilot an EMR equity report including SSOGI, race, ethnicity, age, insurance type, cancer stage, and treatment status among active breast cancer patients seen at LCC/NMH. Successful accomplishment of our aims will advance SGM cancer research and build a strategic foundation to advocate for expansion of SSOGI data collection and to promote SGM cancer health equity initiatives.