Measuring Gender in the Healthy Oregon Project

PROJECT SUMMARY The sexual and gender minority (SGM) community (i.e., LGBTQ+) is vastly underrepresented in cancer research. As such, there are limited data on cancer-related health outcomes and inequities, and a lack of evidence-based approaches to improve health equity. Importantly, the SGM umbrella term encompasses a

heterogenous population, but much work to date has either combined subgroups or failed to disaggregate transgender and gender diverse (TGD) individuals. As such, there is an even greater need to include TGD individuals in research, and to include meaningful and accurate assessment of gender identity in that research.

The NIH has developed recommendations for improvements in clinical research to improve SGM health. These include improved and expanded collection of gender identity and sexual orientation data, attention to intersectionality, and community engagement to ensure cultural competence/humility. The proposed

administrative supplement project follows these recommendations by engaging TGD participants in the process of creating gender measurement items, testing the new measures in a large existing cohort, and conducting descriptive analyses to inform future research. The primary aim of this project is to conduct a

mixed-methods study to guide decisions about terminology used for assessing gender within the Healthy Oregon Project (HOP). Much progress has been made toward improvement in and implementation of gender measurement, but persistent challenges remain. More specifically, current recommendations for language/terminology and response options used may not adequately and inclusively capture gender or the

fluidity of gender identity. Such issues can lead to systemic gender miscategorization and low response rates in research, as well as contribute to discomfort and feelings of exclusion among TGD individuals. With the goal of improved and inclusive gender measurement, we propose to identify and test assessment items through an

iterative process of individual interviews, focus groups, survey implementation in a large community cohort, and consultation with community stakeholders regarding results and recommendations. This work will add novel data to the extensive data already collected through HOP on health behaviors and cancer screening. In

addition, the proposed supplement will facilitate improved data collection across the parent study cohorts that are recruited through HOP and provide a valuable opportunity to address important future questions regarding possible differences in follow on screening and prevention behaviors among TGD individuals who carry an

HBOC or Lynch mutation. More broadly, the results will contribute to the expanded collection of valid gender identity data, the inclusion of TGD-specific data in research, and the improved assessment of cancer outcomes and health disparities for TGD communities.