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Gender, Sex, and Sexual Orientation in Medicine: a Linguistic Analysis

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Gender, Sex, and Sexual Orientation in Medicine: a Linguistic Analysis Gender, Sex, and Sexual Orientation in Medicine: A Linguistic Analysis A dissertation submitted to the Graduate School of the University of Cincinnati in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of Biomedical Informatics of the College of Medicine by Clair Artemis Kronk B.Sc. University of Pittsburgh April 2017 Committee Chair: Judith Dexheimer, Ph.D. ABSTRACT Nine million Americans identify as LGBTQIA+ (lesbian, gay, bisexual, transgender, queer/questioning, intersex, agender/asexual, and other umbrella gender and sexual identity minorities), with an additional 187,000 expressing intersex anatomical variations. LGBTQIA+ populations experience disproportionate amounts of discrimination and stigmatization. A 2017 survey revealed that 51% of LGBTQIA+ people said that they or an LGBTQIA+ friend had experienced violence due to their identity. LGBTQIA+ discrimination is also prevalent in healthcare, 33% of transgender individuals disclosed negative experiences related to a health care provider and 23% described avoiding seeing a doctor when they needed due to fear of mistreatment. Such negative experiences are often connected to language use. Linguistic stigmatization has been tied to poor patient outcomes in healthcare settings. However, current provider education on LGBTQIA+ topics is lacking with a median of 5 hours dedicated to such subjects. A first step to addressing health disparities is to adequately model domain-specific linguistic knowledge. In medicine, language is modelled using controlled vocabularies or ontologies. Ontologies are common, shared networks which explain information in a domain. Such systems allow for greater reuse of domain-specific knowledge, and analysis of that knowledge. Although there are hundreds of biomedical ontologies, none cover LGBTQIA+ subject areas, or the areas of gender, sex, and sexual orientation. ii We created the Gender, Sex, and Sexual Orientation (GSSO) ontology and evaluated its usage in research, education, and clinical domains for accuracy, completeness, conciseness, adaptability, clarity, computational efficiency, and consistency. The GSSO includes over 10,000 entries, 14,000 mappings to other databases, more than 200 slang terms with definitions, 200 nonbinary and culturally-specific gender identities, and 190 pronouns with linked example usages. The GSSO is freely available via GitHub (https://github.com/Superraptor/GSSO) and its website (https://gsso.research.cchmc.org/) as well as via the NCBO BioPortal, EMBL-EBI OLS, and Ontobee (as part of the OBO Foundry ontologies). In research domains, the GSSO was able to perform on par with manually curated literature reviews and outperformed other ontologies in the space. In education, it was able to be easily understood by clinical and non-clinical subgroups. In clinical systems, it outperformed current identification methodologies. We also tested the systems efficacy in LGBTQIA+ language identification in free-text, including research-related abstracts and clinical notes in electronic health records (EHRs). In an LGBTQIA+-specific set of MEDLINE abstracts, the GSSO was able to tag 99.85% versus MeSH tagging 82.62%. In a manually curated transgender bibliography, MeSH would only return 86.9% of results versus the GSSO returning 97.7%. In the EHR, the GSSO outperformed ICD-based identification of transgender persons in both the MIMIC-III (100% versus 46%) and CCHMC (recall and precision of 0.74 and 0.79 versus 0.50 and 0.53) datasets. iii The GSSO is an effective ontological tool which can be applied across a wide variety of domains and questions. iv v ACKNOWLEDGEMENTS I would like to extend my sincere thanks to all persons who helped me over the course of this project and its many individual endeavors. Firstly, many thanks to my primary research supervisor and thesis advisor, Dr. Judith W. Dexheimer, for providing me with the opportunity to pursue research which would likely not be accepted in many places given the current cultural and political climates. She taught me so much over the years I spent here and managed to make me smile even in the worst of circumstances. She is an absolutely incredible mentor. I would also like to thank the other members of my committee, Dr. Giao Q. Tran and Dr. Mark H. Eckman for their time, patience, and expertise. Additionally, I would like to thank administrative and departmental personnel who helped me along this journey, including Dr. Jaroslaw (Jarek) Meller, Dr. Eric Hall, Jill Loch, Mary Jo Petersman, Sonya Harbin, Melissa Hogan, and especially Dr. Batsheva Guy who facilitated my process of coming out at the University of Cincinnati (UC) and Cincinnati Children’s Hospital Medical Center (CCHMC) and helped me navigate numerous issues within the department and the university at large. From the Homosaurus board of directors, I would like to thank K.J. Rawson, Amber Billey, Marika Cifor, Chloe Noland, Jack van der Wel, Bri M. Watson, Jay L. Colbert, and especially the late Walter “Cat” Walker, who passed away tragically in 2020, after 16 years as Head Cataloging Librarian at Loyola Marymount University and 25 years as a volunteer at the vi ONE National Gay & Lesbian Archives at the University of Southern California (USC) Libraries. From the GLBT Museum & Archives, I would like to thank Isaac Fellman, Kelsi Evans, Nalini Elias, and Patricia Delara. From the AIDS History Project and Memory Lives On: Documenting the HIV/AIDS Epidemic project group, I would like to thank Charlie Macquarie, Joanna Kang, Rebecca Tang, and Polina Ilieva. From the board of directors at OutHistory, I would like to thank Jonathan Ned Katz and Dr. Randall Sell. From the American Medical Informatics Association (AMIA) Mental Health Working Group (MH-WG) and the Systematized Nomenclature of Medicine (SNOMED) Mental and Behavioural Health Clinical Reference Group (MBHCRG), I would like to thank Dr. Piper Ranallo and Dr. Jessie Tenenbaum. From the AMIA Diversity, Equity, and Inclusion Task Force (DEI-TF), I would like to thank Dr. Tiffani J. Bright, Dr. Suzanne Bakken, Oliver J. Bear Don’t Walk IV, David K. Butler, Dr. Carl E. Johnson, Dr. Kevin B. Johnson, Dr. Casey Overby Taylor, Dr. Jyotishman Pathak, Carolyn Petersen, Dr. Rubina Fatima Rizvi, Rosemary Ventura, Dr. Karen Wang, Dr. Patricia C. Dykes, and AMIA staff Karen Greenwood, Krista Martin, Lisa Gibson, and Nina Richards. From the Health Sciences Graduate Association (HSGA) and from the Graduate Student Government (GSG), I would like to thank Kenyatta Viel, Jelena Vicic, Caroline Sackleh, Molly Broscoe, Smruti Deoghare, Hannah Russell, and Kara Finley Wolfe. vii To the following individuals (organizations in parenthetical), I would like to give my utmost thanks for their kindness, friendship, compassion, and support over the last few years: Jake Tracy, Albert Carter, Wesley Parker, Avery Everhart, Laur Bereznai, Kiri Stewart, Madg Weighner, Riley Galvin, Louis Markowitz, Florence Paré , Katie Kardum, Sam Jackson, Jennifer Lynn, Mathias Vitullo, Lili LC, Troy Henson, Danielle Parker, Harris Wheeler, Madison Mumma, Jace Rubino, Alex Loss, Jessica Howey, Ariel Mary Ann, Jeremy Brenner-Levoy, Fait Poms, Hugh Ryan, Blair Perry, Madeline Barber, Corey Forman, Gabrielle Cuadra, Susan Stryker, Patti Brennan, Pieter-Jan Van Camp, Surbhi Bhatnagar, Madrid Vinarski, Rachel Golden, Kayleigh Rozwat, Sarah Burns, Christina Lancaster, Andie Vester, Sylvia Guard, Aurora Starr, Angela Larsen, Nora Anderson, and especially the late Ariel Galant, who passed away in 2020 after a lifetime of service to disenfranchised communities. She was an amazing ally and an incredible friend. She will be missed. To my parents, my siblings, and my extended chosen family: thank you so much for all of your support over the course of this project. This document would not be possible without you. Thank you for every time you helped me move, thank you for letting me stay with you during various conferences and work-related trips, thank you for listening to all of my jargon-laden ranting, thank you for asking questions about my work, thank you for visiting me, for keeping me sane during one of the worst pandemics of the last century, during the many times political figures blamed people like me for war, for famine, for mass shootings, during the many death threats I received, through the discrimination I faced in around the workplace and in Cincinnati generally. I would not be here today if it were not for you. viii Additionally, I would like to acknowledge that the University of Cincinnati was built on land forcibly taken from a number of Indigenous Algonquian speaking tribes, including the Delaware, Miami, and Shawnee tribes. This action and the actions of many other colonizers led directly to the deaths of over 100 million Native American and First Nations peoples. I would also like to acknowledge and condemn my specific institution’s promotion of white nationalism, direct and indirect participation in racially-motivated violence, especially against members of the Black community, lack of appropriate mental health resources for students and information regarding suicide prevention, and continued disregard for sexual assault survivors and lack of appropriate response to sexual harassment and violence, as showcased by the dismemberment of Reclaim and Title IX resources. Finally, I would like to acknowledge my transgender siblings, especially the 1,657 who were brutally murdered simply for being trans during my time writing this document. ix TABLE OF
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