For cancer patients who identify as sexual and gender minorities, there is a serious research gap

November 18, 2019

Although research on cancer patients who identify as sexual and gender minorities has grown over the past few years, more studies are needed to improve cancer care delivery and outcomes for these underserved populations, according to a new paper from the UNC Gillings School of Global Public Health.

Dr. Erin Kent

In the most recent issue of the journal Cancer, Erin Kent, PhD, associate professor of health policy and management, co-authored a review of the experiences that individuals of sexual and gender minorities face in cancer care. Kent, who joined the Gillings School faculty this summer, conducted the study while she worked at the National Cancer Institute.

Although sexual and gender minorities (SGMs) face a disproportionate burden of cancer, only limited data are available on cancer experiences among SGM men and women. Kent and her colleagues’ review found substantial gaps in research on SGM cancer patients due to a lack of population-based data and small sample sizes – likely because sexual orientation and gender identity information is not systematically collected in cancer care environments.

This research gap limits the recognition of cancer and other health disparities in this underserved population, as data collected by diagnosing and treating hospitals and physicians’ offices are the primary source of information on new cancers for population-based cancer registries.

Accordingly, Kent says, patient disclosure of sexual orientation and gender identity information to clinicians is a key issue in SGM health care delivery research. Sexuality and gender comprise core components of individual patient identity and may be associated with specific health care needs and vulnerability to different treatments.

“This kind of demographic data is vital for understanding true population characteristics and burden of disease,” Kent explains. “It is clear that we need studies to help understand how sexual orientation and gender identity information is being captured in health care settings and how to best facilitate safe, welcoming, trustworthy health care settings that meet the needs of sexual and gender minority patients.”

Before coming to UNC, Kent was part of the National Cancer Institute’s Healthcare Delivery Research Program (HDRP). The experiences and needs of patients in underserved populations, including sexual and gender minorities, was a major priority of the mission of HDRP, which recognized that research on cancer care delivery was not well-characterized for SGM populations.

Kent and her colleagues initially identified 1,176 peer-reviewed citations from four databases and, after further analysis, found that only 37 studies published between 1998 and 2017 met the study criteria of being focused specifically on SGM cancer care. Thus, they determined that further research is needed to identify and remove the barriers to delivering high-quality care to SGM individuals with cancer.

“This paper was part of a larger effort aimed at pointing out gaps in research and the opportunity to address health disparities in SGM populations,” Kent says.

The next step, she believes, is to increase awareness of these gaps among researchers, clinicians, health care administrators and funders.

“Individual researchers can do a lot by including sexual orientation and gender identity information data collection in their work and by designing studies to improve the health care experiences of sexual and gender minority individuals with cancer,” she says.

Contact the Gillings School of Global Public Health communications team at sphcomm@unc.edu.