The Equitas Health Institute works to improve the health and wellness of lesbian, gay, bisexual, transgender, and queer/questioning community members. We do this by spearheading innovative research, developing exceptional education and training curricula, and supporting comprehensive community education initiatives/programming. The Equitas Health Institute is dedicated to research that illuminates the need to combat LGBTQ+ health disparities and health of other marginalized groups disadvantaged in healthcare. In collaboration with universities and public stakeholders, Equitas Health Institute has at its core the mission of bettering the lives of the LGBTQ+ population.
Why is it important for Equitas Health to become involved in research?
First of all, there is a huge gap in research targeting the LGBTQ+ community in general. Second, Equitas Health is well respected for its commitment to improving health for those at risk of or affected by HIV, for the lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) community, and for those seeking a welcoming healthcare home. There is the opportunity to explore and affect the state of health of the population we serve. The variety of Equitas Health Institute research activities pursued reflect the diversity of the Institute’s research priority areas and the clinical needs of the organization.
We believe that the intersectionality experienced by the queer community is also informed by social constructs outside of gender identity and sexual orientation. Equitas Health Institute will continue to support and conduct research that explores the totality of the person, including social, ethical, and systems research in social determinants in which “people are born, grow, live and age” (Kaiser Family Foundation). Research should be done with the LGBTQ+ community not merely in it, so the Institute is dedicated to engaging the communities we serve in research that affects them.
Research Program Aims
- Foster opportunities for community engagement in research
- Produce community-engaged and community-placed research that matters
- Work with communities, groups, organizations and stakeholders to understand and identify community priorities that can be explored with research
- Increase awareness for the role that research can play in solving community needs
- Conduct original research with external research partners and internally at Equitas Health
- Secure external funding to support research studies that support the values and mission of Equitas Health
- Serve as a research clearinghouse for LGBTQ+ and to a less extent, broader health disparities research, including disseminating Equitas Health associated research in academic outlets and public media
What’s Hot in Equitas Health Institute Research?
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.
Michele Battle-Fisher recorded a course lecture entitled “The complexity of health disparities among marginalized populations- a call for complexity and systems thinking” to the Sherwin B. Nuland Summer Institute in Bioethics (2021) at Yale University. The talk discussed the systemic complexity of health disparities, namely those of LGBTQIA+ and populations of color. Using systems based visualizations, Michele made the argument that health disparities are unethical and systems thinking illuminates that fact. The Institute, which takes place July 2021, is convened by the Yale Interdisciplinary Center for Bioethics. The presentation is not publically available.
Lesbian-identified individuals face unique challenges that have direct affects on their health, so why is addressing these challenges such a radical idea?
Our mixed method study explores the healthcare experiences of lesbian-identified people, combining quantitative survey data, qualitative “share your story” responses, and a focus group of sexual minorities of color.
Equitas Health Institute is serving on the study team for a five year NIH funded study, Project RESIST, which is determining the effects of tobacco messaging and marketing on young adult sexual minority women. The Institute’s director, Julia Applegate, serves on the expert advisory committee for the study.
A report by Fung et al. (2019) suggests that sexual and gender minority individuals (SGM) may have a higher risk than their cisgender, heterosexual counterparts for breast/chest tissue cancer. Past negative experience with healthcare providers has been reported to prevent SGM from seeking care that is beneficial to their health. Milner & McNally (2020) reported that psychological barriers and non-disclosure of sexual identity due to fear of bias, discrimination, and stigma hindered adherence to mammography screening guidelines for lesbian, bisexual and transgender identified folx.
Public health crises highlight already existing disparities that are often unseen or overlooked. In the past year, the COVID-19 pandemic and its resulting changes to society have severely affected populations worldwide. While mortality is but one measure of the severity of the pandemic, the numbers continue to rise with scores of individuals infected daily.
In response to the escalating effect of systemic barriers to health and wellbeing of marginalized populations, the Franklin County Board of Commissioners declared in May 2020 racism to be a public health crisis (Franklin County Board of Health, 2020). The declaration proclaimed that “racism and segregation in Ohio and Franklin County have exacerbated a health divide”. Ohioans who are racial or ethnic minorities often have lower wealth, socioeconomic status, and education attainment, and herein lies the early factors for many health barriers.
Equitas Health Institute received a grant in 2020 with Ohio University College of Osteopathic Medicine, Diabetes Institute, Dr. Elizabeth Beverly (Principal Investigator). The Institute will support Ohio University in the development of a Virtual Reality Curriculum introducing medical students and healthcare providers to LGBTQ+ and Trans-centered culturally competent care.