Sexual Orientation and Gender Identity (SOGI) Data Collection

Overview

Eliminating cancer-related disparities by promoting and conducting health equity research is a top priority of the National Cancer Institute. Sexual and gender minority (SGM) populations face disparities related to cancer risk and outcomes, and they experience barriers in cancer prevention, treatment, and survivorship care. SGM populations include, but are not limited to, individuals who identify as lesbian, gay, bisexual, asexual, transgender, Two-Spirit, queer, and/or intersex. Individuals with same-sex or -gender attractions or behaviors and those with a difference in sex development are also included. These populations also encompass those who do not self-identify with one of these terms but whose sexual orientation, gender identity or expression, or reproductive development is characterized by non-binary constructs of sexual orientation, gender, and/or sex.

Despite limited cancer research focusing on SGM populations, studies have shown that certain cancer risk factors such as alcohol use, tobacco use, obesity, and oncogenic viral infection are more prevalent amongst SGM individuals. Higher incidence of specific cancers and barriers to screening and follow-up care increase the risk of poor health outcomes in this population. Some SGM people, especially those identifying as transgender and bisexual, are less likely to have health insurance compared with cisgender and straight populations, which contributes to later diagnoses of more advanced cancer, delayed treatments, and overall poorer health care quality. It is also well established that SGM individuals are more likely to experience discrimination and provider biases in health care settings, and less likely to receive culturally competent care, often leading to poorer cancer outcomes.

A large barrier to advancing SGM cancer research is the lack of sexual orientation and gender identity (SOGI) data collection in surveillance, research, and clinical settings. Without the availability of vast, longitudinal SOGI data, cancer risk, incidence, and mortality trends for SGM populations are difficult to ascertain and research. The recently released Consensus Study Report of The National Academies of Science, Engineering, and Medicine, “Measuring Sex, Gender Identity, and Sexual Orientation,” provides recommendations for the National Institutes of Health (NIH) to adopt standardized and parsimonious practices for collecting data on sex, gender, and sexual orientation to address these challenges.

This initiative provides resources to study the implementation of standardized SOGI data collection at NCI-Designated Cancer Centers, in collaboration with their satellite and outlying clinics, and to assess factors associated with implementation, such as feasibility, acceptability, adoption, and appropriateness.