Recently, the Duke University Health System incorporated the collection of Sexual Orientation and Gender Identity (SOGI) and sexual behavior data into their electronic medical records (EMRs). The perceptions of the LGBTQIA+ and the heterosexual cisgender community on the appropriateness, effectiveness, and utility for clinical-decision making have not yet been assessed at Duke University or within other healthcare systems across the nation. As such, there is a need for studies to assess whether this information is being collected appropriately and how it can be used to guide clinical practice and care for members of all sexual orientations and gender identities. Also, these studies may guide whether current data collection methods can effectively assist in more appropriate and effective dissemination of STI testing, contraceptive use, and sexual practice education to patients in the future.

The purpose of my Paul Ambrose Scholars Program (PASP) study was to gather perceptions and input on how questions about sexual orientation, gender identity, and sexual risk behaviors are included as a routine part of medical visits as well as how the implementation of these questions could affect future clinical decision-making. Perceptions were intentionally gathered from LGBTQIA+ community members as well as straight cisgender community members. The research team that I worked with on this study was led by my two mentors at Duke University, Christine M Everett, PhD, PA-C, MPH (Associate Professor, Department of Family Medicine and Community Health & Department of Population Health Sciences) and Tiffany Covas, MD, MPH (Medical Instructor, Department of Family Medicine and Community Health). The remaining team members included Truls Ostbye, MD, MPH (Professor and Vice Chair of Research, Department of Family Medicine and Community Health), Ashley Price, PhD, MPH (Research Program Leader, Department of Family Medicine and Community Health), Deanna W. Adkins, MD (Assistant Professor, Department of Pediatrics, and Director, Duke Child and Adolescent Gender Care Clinic), Adva Eisenberg, MD (Assistant Professor, Department of Medicine), Carly E. Kelley, MD, MPH (Assistant Professor, Department of Medicine), Rheaya Willis, BA (Fourth year Medical Student, College of Medicine), Lauren Hart, MPH, MSW (Research Program Leader, Department of Family Medicine and Community Health), and Jacob Christy, MS (Clinical Research Coordinator, Department of Family Medicine and Community Health).

This is a mixed-methods study with two phases. Phase 1 was an electronic survey compiling the opinions of members of both communities on the implementation of the SOGI and sexual risk behavior questions, responses to the current Duke SOGI and sexual risk behavior questions, responses to a new set of proposed sexual risk behavior questions, and interest in further participation in phase 2. Phase 2 is focus groups to gather additional information from a subset of the respondents from phase 1, soliciting more detailed feedback on the existing Duke tools for gathering patient SOGI and sexual risk behavior information, proposed revisions to both the SOGI and sexual risk behavior tool, and general questions about the best methodologies of implementing both tools (e.g., who, when, where). In collaboration with the LGBTQIA+ Community Advisory Board over the first year of PASP, the entirety of the study (protocol, electronic survey for phase 1, and focus group guides for phase 2) was modified and later approved by the Duke Institutional Review Board (IRB).

During this period, the research team was also awarded two institutional grants. The first was the Duke Family Medicine and Community Health Departmental Small Grants (DSG) Program for Research & Scholarship. The second is a pending (due to the COVID-19 pandemic) Clinical and Translational Science Institute (CTSI) Special Populations Pilot award given to studies with a community-engaged partnership and designed to facilitate research that promotes health equity for groups who have traditionally been underrepresented or excluded altogether. These will be used for phase 2 and for follow-up studies to validate a SOGI & sexual risk behavior tool to be implemented in the Duke Health System. Currently, phase 1 has recruited 1,279 participants and the team is in the process of scheduling focus groups and starting phase 1 data analysis. These focus groups will provide richer, qualitative data to utilize for both guiding future sexual orientation and gender identity (SOGI) & sexual behavior data for healthcare systems within NC and beyond.

Since this was a community-based project, our research team worked very closely with members of the LGBTQIA+ and straight, cisgender communities on different levels before submitting to the IRB for approval. The result of this collaboration and community-engagement has been a continued relationship with the LGBTQIA+ community advisory board who plan to continue guiding all future research done by providers within the Duke Family Medicine and Community Health department. This group was instrumental in guiding our direction, line of questioning, and providing clarity and education on areas that the team was unsure of how to best approach with members of the LGBTQIA+ community. The successes the research team has had largely stemmed from the relationships already built upon by Dr. Covas (Duke Family Medicine MD) with members of the LGBTQIA+ community before this study.

Throughout my two years in the Paul Ambrose Scholars Program (PASP), I learned the nuances of a community-based research study, the process of collaborating with a community advisory board, and the importance of the perspective and knowledge they bring to a research study. Without the guidance of my mentors within the Paul Ambrose program and at Duke University, my growth and understanding of the research process would not be where it is today. The Paul Ambrose program was one of the most meaningful experiences of my graduate training and has allowed me to grow both as a researcher and soon-to-be clinician.

Kiarash Rahmanian, MPH, MHS, PA-C