Toward an improved screening protocol: developing and testing an organ inventory for strengthening clinical care and research

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PROJECT SUMMARY This project aims to develop and test a novel measure – an evidence-based organ inventory – to improve upon existing measurement of gender identity among transgender and gender nonbinary (gender minority) populations in cancer research and care. Gender minorities face numerous barriers to healthcare access, and specifically to cancer care, in large part due to the gendered nature of current screening protocols. Epidemiological data highlight disproportionate exposure to modifiable cancer risk factors and disproportionate cancer burden among gender minorities. However, gender minorities are also less likely to receive appropriate cancer screening. This discord is, in part, due to the failure of current measures of gender identity used in research and clinical care to provide the requisite information for cancer screening, care, and research for gender minorities, many of whom may have organs that are inconsistent with their gender identity. This project proposes to implement a mixed methods study aimed at developing a novel measure that will improve data quality, strengthen adherence to recommended cancer screening protocols for gender minorities, and reduce participant burden. The specific aims of this project include the (1) development of an evidence-based organ inventory in English and Spanish, the two most common languages spoken among gender minorities in the United States, informed by qualitative research with both gender minority and cisgender participants collected via focus group discussions; and (2) evaluation of the acceptability of the organ inventory among gender minorities, and estimation of the discordance between organs present as reported in the inventory versus gender identity and sex assigned at birth, via an online, quantitative survey. The World Professional Association for Transgender Health has called for such an organ inventory, a measure that would ask each person to indicate the organs that they have from a list that is not gender- or sex-specific. This study will address important methodological gaps in current measurement of gender identity and enable us to improve eligibility screening for cancer care and research with greater accuracy, sensitivity, and relevance, across a broader and more diverse population than previously possible. For gender minorities, this research could translate to increased research participation via more inclusive, less burdensome measures, more accurate data, and ultimately, reduced cancer-related morbidity, mortality, and healthcare costs due to earlier risk detection. Further, the organ inventory could be generalizable for people of all genders; and future research could explore translation into other languages and best practices for implementing the organ inventory in clinical intake forms, screening checklists, research eligibility assessment, and more, for all people.