Data “Invisibility” in LGBTQ+ Breast/Chest Health Disparities
Written by Rebecca Harris. Research Intern
Why is it that LGBTQ+ individuals are invisible when it comes to understanding the burden and reasons for breast/chest disparities in their population? It is because they are invisible in the data. Although LGBTQ+ breast/chest health data does exist, there is a lack of specificity and inclusion in data collection. In other words, this important data could give answers to why LGBTQ+ folx experience breast/chest health issues at disproportionate rates. Sometimes in research, sexual orientation and gender identity (SOGI) data is not collected. This can translate to sexual orientation and gender identity not included in medical records. Even among U.S. public health data, monitoring systems, and cancer registries which help to track disease, few collect SOGI data (Kress et al., 2021; Cathcart‐Rake et al., 2018). Why is data inclusion important? It is an acknowledgement that LGBTQ+ folx deserve culturally humble and appropriate care. One important example of the power of LGBTQ+ data is the Almazan et al. (2021) study that found a link between citywide nondiscrimination policies and better SOGI data collection in federally qualified health centers. When SOGI data in breast/chest care is collected in areas that don’t fight discrimination, those patients are placed into inappropriate categories that do not specify their unique experiences. According to Wolff et al. (2017), inaccurate and inconsistent ways of measuring sexual orientation leads to a poor understanding of the people studied.
It is frustrating to learn that overall, there is very little data available on LGBTQ+ breast and chest health and the factors that influence it. In a search of current data on breast/chest cancer among lesbian and bisexual women, there was nothing found on estimated new cases of breast/chest cancer in this population (Meads, 2013). While there have been changes since this study, there is not enough data in comparison to heterosexual and cisgender counterparts.Another study, by Clarke et al. (2021), states that transgender individuals experience different rates of breast cancer development than cisgender individuals. Very little data explores these differences in outcomes further. The study also mentions a lack of agreement as to prevention and screening guidelines for patients who are transgender (Clarke, 2021).
One example of improving SOGI data collection is the Behavioral Risk Factor Surveillance System (BRFSS). BRFSS is a federally funded, national health survey that is conducted every year. It includes data collection on mammography behaviors, but not until 2013 were a set of SOGI questions created by the CDC and added to the survey. By 2015, 25 states and territories were using the SOGI questions when they conducted the survey (Baker & Hughes, 2016). By 2020, that number had increased to 33 (Centers for Disease Control and Prevention). Baker and Hughes (2016) urge all jurisdictions to use the CDC’s questions because they were created under the guidance of sexual orientation and gender identity experts. Both consistency and appropriate wording of survey questions are important for collecting accurate data.
Without SOGI data, it would not be known that there are higher rates of breast/chest cancer among LGBTQ+ folx. According to Quinn et al. (2015), lesbian-identified and bisexual folx are at a higher risk for breast/chest cancer, partially due to higher amounts of alcohol use, smoking, and obesity. The same article by Quinn et al. (2015) mentions that poor experiences with healthcare providers result in many in the LGBTQ+ community avoiding care such as breast/chest cancer screening. When examined further, the behaviors mentioned can be explained by things outside of the individual’s control, such as minority stress. Without good data measurement about every part of a person’s life, including SOGI data, it is impossible to get an accurate picture of the reasons behind health disparities. This is important because according to the American Cancer Society, there are higher survival rates when breast cancer is caught and treated at earlier stages (American Cancer Society, 2022). Comprehensive and thoughtful data collection can save lives.
Almazan, A. N., King, D., Grasso, C., Cahill, S., Lattanner, M., Hatzenbuehler, M. L., & Keuroghlian, A. S. (2021). Sexual Orientation and Gender Identity Data Collection at US Health Centers: Impact of City-Level Structural Stigma in 2018. American Journal of Public Health, 111(11), 2059–2063. https://doi.org/10.2105/ajph.2021.306414
American Cancer Society. (2022, March 1). Survival Rates for Breast Cancer. Retrieved July 5, 2022, from https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-survival-rates.html
Baker, K., & Hughes, M. (2016, March 29). Sexual Orientation and Gender Identity Data Collection in the Behavioral Risk Factor Surveillance System. Center for American Progress. Retrieved July 20, 2022, from https://www.americanprogress.org/article/sexual-orientation-and-gender-identity-data-collection-in-the-behavioral-risk-factor-surveillance-system/
Cathcart‐Rake, E. J., Zemla, T., Jatoi, A., Weaver, K. E., Neuman, H., Kazak, A. E., Carlos, R., Gansauer, L., Unger, J. M., Pajewski, N. M., & Kamen, C. (2018). Acquisition of sexual orientation and gender identity data among NCI Community Oncology Research Program practice groups. Cancer, 125(8), 1313–1318. https://doi.org/10.1002/cncr.31925
Centers for Disease Control and Prevention. (2021, August 26). CDC – BRFSS – Questionnaires 2020 Modules by State by Data Set & Weight. Retrieved July 20, 2022, from https://www.cdc.gov/brfss/questionnaires/modules/state2020.htm
Clarke, C. N., Cortina, C. S., Fayanju, O. M., Dossett, L. A., Johnston, F. M., & Wong, S. L. (2021). Breast Cancer Risk and Screening in Transgender Persons: A Call for Inclusive Care. Annals of Surgical Oncology, 29(4), 2176–2180.
Kress, A. C., Asberry, A., Taillepierre, J. D., Johns, M. M., Tucker, P., & Penman-Aguilar, A. (2021). Collection of Data on Sex, Sexual Orientation, and Gender Identity by U.S. Public Health Data and Monitoring Systems, 2015–2018. International Journal of Environmental Research and Public Health, 18(22).
Meads, C., & Moore, D. (2013). Breast cancer in lesbians and bisexual women: systematic review of incidence, prevalence and risk studies. BMC Public Health, 13(1).
Quinn, G. P., Sanchez, J. A., Sutton, S. K., Vadaparampil, S. T., Nguyen, G. T., Green, B. L., Kanetsky, P. A., & Schabath, M. B. (2015). Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA: A Cancer Journal for Clinicians, 65(5), 384–400.
Wolff, M., Wells, B., Ventura-DiPersia, C., Renson, A., & Grov, C. (2017). Measuring Sexual Orientation: A Review and Critique of U.S. Data Collection Efforts and Implications for Health Policy. The Journal of Sex Research, 54(4–5), 507–531.