Composed of nine interdisciplinary individuals from various departments, including Epidemiology, Cancer Registry, Clinical Cancer Prevention, Health Disparities Research, Medical Oncology, Radiation Oncology, and Clinical Ethics, the committee was self-organized in 2021 and includes faculty, administrators, researchers, and clinicians. This core group shared a vision to identify and implement culturally appropriate, institutionally sustainable interventions and patient-focused projects to improve cancer care and research for SGM health, not to change individual attitudes but to affect professional behavior relevant to patient care and research. The committee included faculty and staff who played integral roles in prior system-wide practice changes to implement processes to uniformly collect and report gender, race, and ethnicity data among all newly and previously registered patients in 2014 following the installation of a new electronic health record aligned with federal reporting requirements.
The committee was formed to address foundational gaps around institutional SOGI data collection and management. Although patients could self-identify their SOGI information through their electronic health record portal before the committee’s formation, the absence of context or support provided by patients’ clinical teams resulted in sporadic and low rates of completion of SOGI data fields by patients. While physicians and advanced practice providers were institutionally recognized as potential contributors to the accurate collection of SOGI data, the lack of standardized workflows and assigned responsibility for eliciting and recording data also led to low completion rates. Concurrently, limited staff training regarding data collection and appropriate use of SOGI data in patient charts and encounters existed, inhibiting the confident and professional behavior desired of staff.
Need for Institutional Learning and EngagementThe committee’s proactive stance and institution’s mission of continuously improving patient-directed care led to submission in January 2021 of an administrative supplement to the NCI, outlining a nationwide collaboration to collect SOGI patient data across academic medical centers. The initial success of garnering executive leadership support for the supplement motivated the committee to consider other ways to foster institutional learning and engagement, including inviting speakers or organizing poster sessions on SGM education and research with institutional and external meeting participants. Ultimately, the rationale for organizing an institutional retreat prevailed, grounded in the premise that such an event could provide a platform for institution-wide engagement and open exchange of ideas from diverse stakeholders. The committee recognized that potential action plans resulting from the open forum might conflict with other institutional initiatives, and so worked with leaders to plan the retreat to avoid such conflicts. The committee also managed activities of the retreat to abide by state policies and procedures for the institution, a state university-affiliated healthcare organization.
Retreat DesignTwo half-day institutional retreats have now been held in 2022 and 2023. Organized in 4-h blocks, the agendas had a primary emphasis on fostering engagement and candid dialog through small-group sessions. A virtual option for attendance facilitated participation by staff working remotely due to the COVID-19 pandemic or unable to leave clinical posts; however, participants were strongly encouraged to attend in person. The retreats were held in conference rooms equipped with audiovisual capabilities to facilitate interaction between in-person and virtual attendees and presenters.
Throughout planning, several strategic decisions were made to enhance success. First, although the retreat was open to all 24,000 institutional employees, targeted invitations were used to secure the representation of executive leadership, division chairs, and patient advocates in retreat discussions reflecting a range of institutional perspectives and lived experiences. Second, the retreat began with brief presentations on SGM cancer care, education, and research to prime ideas that could be developed in smaller group discussions into actions and plans. Third, limiting discussion groups to 15 participants helped facilitate robust conversations. Fourth, retreats were scheduled in June to coincide with institutional attention toward Pride-related events, helping foster a supportive environment. Fifth, senior leaders were actively involved in planning to ensure the committee goals aligned with leadership-approved strategies. Finally, interprofessional teams of faculty members, executive leaders, and trainees served as retreat organizers to facilitate more informative and collaborative discussions in small groups.
Retreat ContentThe 2022 retreat commenced with a large-group session including an introduction to the retreat’s objectives and short talks selected by the committee focused on patient education, staff training, and clinical research. Following the presentations, attendees transitioned to small-group sessions facilitated by four interprofessional faculty. These sessions emphasized fostering collaborative discussions among frontline staff, senior executives, physicians, researchers, and ancillary staff on patient-centered care, education, and research for SGM populations.
To develop specific, measurable, achievable, relevant, and time-bound (SMART) initiatives, the small groups conducted discussions focused on two areas:
1.Expanding clinical and research ideas to facilitate the care and study of SGM populations. Facilitators elicited views on the collection of SOGI data and how data may be used to further the study of risks, prevalence, and oncologic outcomes for SGM patients.
2.Identifying critical components needed for creating a safe and welcoming environment for SGM patients and staff, including for staff education for patient safety. Facilitators elicited ideas on training resources and strategies needed for creating a more welcoming and comfortable patient environment in physical and electronic spaces.
Following the small-group sessions, facilitators regrouped to discuss next steps based on the participants’ goals. Activities included reviewing statements made and identifying collaborators for future work. The event concluded with time for participants to critically evaluate the retreat.
Retreat ContentThe 2023 retreat commenced with a large-group session spotlighting progress on institutional initiatives stemming from the 2022 retreat. This session was followed by a keynote address delivered by the Director of the SGM Research Office at the NIH, Dr. Karen Parker focused on best practices in data collection, analysis, research, and reporting. Subsequent small-group discussions focused on advancing ongoing projects and conceiving novel initiatives.
Logistics/PreparationPreparation for each years’ retreat was initiated 3 months in advance to secure venue reservations, coordinate schedules, and ensure clinical coverage for participating front-line staff. The committee held regular meetings to review the agenda, logistics, strategies for engaging virtual attendees, and goals. Post-retreat, debriefing sessions were conducted to share insights and pinpoint areas for future enhancement.
EvaluationAs the purpose of the retreat was not to impart specific knowledge of SOGI terms or healthcare disparities within the LGBTQ community, the retreat’s evaluation scored participant engagement during the retreat and overall satisfaction. The evaluations were collected via structured online forms in 2022 and 2023. These questionnaires featured both quantitative and qualitative components; the 2022 form consisted of seven questions and achieved a 56% (27/46) response rate, and the 2023 form comprised 30 questions and obtained a 36% (21/58) response rate.
Data AnalysisDescriptive statistics were used to analyze survey items. All responses from open-ended questions were compiled for review by the committee.
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