Research Horizons


Language Resource Provides Standardized Health Terminology in Gender and Sexual Orientation

Today, approximately 9 million Americans identify as LGBTQIA+. This acronym—which stands for lesbian, gay, bisexual, transgender, queer/questioning, intersex, agender/asexual, and others—is one of many terms surrounding gender and sexual identity.

As this language constantly evolves, it can be difficult for health care providers to stay informed. That’s why researchers at Cincinnati Children’s created the Gender, Sex, and Sexual Orientation Ontology (GSSO)—an integrated vocabulary system that provides a centralized resource for gender and sexual orientation terminology.

By using the GSSO to learn this terminology, clinicians can improve communication, trust, and overall health outcomes in LGBTQIA+ patients.

Understanding the Impact of Language

In patient-clinician relationships, communication is key. However, existing medical literature creates an uphill battle for clinicians to effectively connect with LGBTQIA+ patients. While research in gender and sexual orientation is rapidly expanding, current resources for terminologies aren’t keeping up—they often provide inconsistent and incorrect guidance.

These knowledge gaps exacerbate the challenges faced by LGBTQIA+ patients in health care, which already include a history of discrimination and mistreatment. Usage of incorrect language further deepens a sense of mistrust felt by many in this population.

How can we do better for these patients? Learning about gender and sexual orientation terminology is an important step in improving outcomes, but resources must first be accessible and accurate.

Establishing an Integrated Vocabulary System

The need for better resources inspired Clair Kronk, a PhD student in Biomedical Informatics at Cincinnati Children’s and the University of Cincinnati, to explore a new way of providing standardized health terminology. With the guidance of advisor Judith Dexheimer, PhD, Kronk spent hundreds of hours reviewing terms, usages, slang, and literature in existing resources. This process revealed many pain points—prominent ontologies were large, difficult to read, and lacking definitions.

“My first thought was that these ontologies were designed for computational use more so than human-readable resources,” says Kronk. “A good ontology is about being adaptable and expansive, while also being focused and concise. There should be a balance between colloquial, academic, and medical languages.”

Building on these insights, Kronk set out to design a centralized, fully referenced, and non-pathologizing language resource. The resulting Gender, Sex, and Sexual Orientation Ontology (GSSO) system was first presented at MedInfo 2019. It works by using Protégé, an open-source ontology framework from Stanford University, to lay out terminology in XML and RDF file types.

Initially including 6,250 terms, the GSSO covers diverse topics from abstinence to zygosity. Synonyms, mappings to other ontologies, and select language translations provide a strong basis for learning. Users can also harness the data for a variety of applications, including term tagging, machine learning models, social media, electronic health records, and software systems.

Improving and Evolving the Ontology

Since its debut, the GSSO has garnered significant interest, propelling to the top five percent of all ontologies visited on the NCBO BioPortal website. As traffic volumes and use cases increased, Kronk focused on improving the system’s functionality and accessibility.

“I learned a lot since designing the first system—namely the more technical aspects of ontology building,” says Kronk. “Balancing human and computational readability is important, but so is including perspectives from multiple disciplines. Medical, psychological, and sociological data are vital. To understand the full story of the terminology, though, we also have to include viewpoints deriving from humanities, linguistics, and qualitative research.”

The newest version of the GSSO, recently published in the Journal of the American Medical Informatics Association, includes 10,060 terms. By placing over 7,000 human-readable definitions into computer-readable hierarchies, the GSSO is capable of tagging thousands of documents in a matter of minutes.

Next, Kronk plans to release a GSSO web portal, making the resource accessible to more health care providers. Through integration with the electronic health record, clinical training programs, and literature reviews, knowledge of gender and sexual orientation terminology can make a positive impact on LGBTQIA+ health outcomes.

“Creating a reliable resource covering LGBTQIA+ language is a first step in helping improve patient-clinician communication,” says Kronk. “It’s extremely important for clinicians to know about health experiences of LGBTQIA+ persons—making this information easily accessible is absolutely vital.”

Access the open-source GSSO on the NCBO BioPortal.

— Post written by Dakota Campbell

Publication Information
Original title: Development of the Gender, Sex, and Sexual Orientation ontology: Evaluation and workflow
Published in: JAMIA
Publish date: June 17, 2020
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