NCT05845476

Sexual Orientation and Gender Identity (SOGI) Data Collection Program Implementation and Evaluation

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 54 (actual)
• Sponsor: Ohio State University Comprehensive Cancer Center · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

Sexual and gender minority (SGM) individuals experience significant cancer-related health disparities across the cancer continuum. The overall goal of this proposal is to assess multi-level barriers associated with sexual orientation and gender identity (SOGI) data collection in the health record as well as implementation factors including feasibility, acceptability, and data completeness. The results of this study will make a significant impact by making SOGI data available for research, addressing barriers to SOGI data collection in a large comprehensive cancer center, and informing compassionate cancer care for SGM people.

Detailed description

Sex and gender minority people (SGM, i.e., lesbian, gay, bisexual, transgender, queer, and other people of diverse sexual orientation or gender identity (SOGI) experience significant cancer-related health disparities across the cancer continuum. SGM people have an increased risk for some cancers, may be diagnosed at more advanced stages of the disease, and have poor mental health outcomes. Despite calls from national organizations for systematic collection of SOGI data, this information is not routinely collected in health research or clinical health records, perpetuating the invisibility of SGM people in research and clinical care and fueling health disparities. Systematic and standardized collection of SOGI data is necessary for assessing cancer-related health outcomes through cancer registries, for comparing outcomes and care delivery in clinical trials, and for providing culturally relevant care for SGM people. Barriers to systematic SOGI data collection come from patient, clinician, and system levels. Multilevel barriers to SOGI data collection require a multilevel approach to create standardized, systematic program implementation and evaluation at cancer centers across the country. Barriers and best practices for SOGI data collection likely differ by region and institutional history and culture. Ohio is traditionally a conservative 'red' state, with large rural and Appalachian regions. The catchment area for The Ohio State University Comprehensive Cancer Center (OSUCCC) encompasses Ohio's 88 counties and nearly 11.8 million people -- many of whom come from diverse, and often underserved, populations including urban, rural, Appalachia, immigrant, Amish, and SGM communities. Thus, OSUCCC is well-positioned to make a significant impact in the health of SGM Ohioans through systematic SOGI data collection and improved SGM-sensitive clinical care and culture. The overall goal of this Administrative Supplement is to assess multi-level barriers associated with SOGI data collection as well as implementation factors including feasibility, acceptability, and data completeness. To accomplish this goal, the investigators propose two aims. First, the investigators will develop effective strategies to collect SOGI data based on barriers and facilitators identified at the patient, staff/provider, and cancer center levels. The investigators will accomplish this through community and patient focus groups, staff/provider interviews, and a cancer center environmental scan. Second, the investigators will implement a systematic SOGI data collection program at the patient, staff/provider, and cancer center levels with systematic program evaluation at all levels. The investigators will accomplish this through patient self-report, staff/provider training, and changes in cancer center medical record, policy, and environment of care. This proposal is innovative because our SOGI data collection program operates at multiple levels within the healthcare delivery context and includes both central medical campuses and satellite clinics. The results of this study will make a significant impact by 1) making SOGI data available for cancer registries, 2) addressing factors associated with implementation in a large comprehensive cancer center, and 3) informing culturally responsive cancer care for SGM Ohioans.

Conditions

• Cancer Surveillance

Interventions

Type	Name	Description
OTHER	Patient SOGI Self-Report	EPIC® MyChart electronic health records messages will go to OSUCCC patients of pilot clinics who have incomplete SOGI data in their record and are enrolled in OSU MyChart. The message will request that patients complete SOGI data fields, with an explanation about why it is important for their health care, as well as links to document this information in their electronic health record (EHR). Intervention Description: EPIC® MyChart EHR messages will go to OSUCCC patients of pilot clinics who have incomplete SOGI data in their record and are enrolled in OSU MyChart. The message will request that patients complete SOGI data fields, with an explanation about why it is important for their health care, as well as links to document this information in their electronic health record.
OTHER	SOGI Resource for Clinical Care Education (SORCE)	SOGI Resource for Clinical Care Education (SORCE) training includes cultural competency and health education. SORCE training has been used on a smaller scale for two years at the OSUCCC-James, receiving excellent scores for presentation quality, knowledge gained, and presenter expertise. For the present study, SORCE training will be tailored based on results from Aim 1. The training curriculum includes didactic content (basics of the LGBTQ+ community, SOGI data collection for patient care and research, and social determinants of health for the LGBT community, 15 minutes), EHR SOGI data documentation demonstration (10 minutes), and open dialogue and role play (20 minutes). Trainees will be given EHR documentation tip sheets and laminated pocket cards with best practices for asking about SOGI, steps for documenting in the EHR, and additional resources.
OTHER	Cancer Center Care Environment	At the level of the OSUCCC, to include all inpatient and ambulatory spaces, the investigators will implement important measures aimed at changing culture and practice. This includes modification of policy and the EHR for SOGI documentation per National Academy of Science Engineering and Medicine recommendations, a multi-pronged approach to making the environment of care more visibly welcoming for SGM people, and leveraging existing diversity, equity, and inclusion structures and initiatives to shift culture at the cancer center.

Timeline

• Start date: 2023-03-14
• Primary completion: 2024-03-14
• Completion: 2024-03-14
• First posted: 2023-05-06
• Last updated: 2025-03-17

Locations

1 site across 1 country: United States