People from sexual and gender minoritized (SGM) communities—including those who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, or anyone who doesn’t fit into the heterosexual or cisgender categories—often face significant health disparities when it comes to cancer care. These disparities are largely driven by social factors and systemic gaps in healthcare delivery, including a lack of culturally competent providers and screening guidelines tailored to SGM individuals. Research shows that SGM people have a higher risk for certain cancers, partly due to factors such as smoking, alcohol use, and other risk factors. On top of that, they’re less likely to get regular cancer screenings, leaving many at risk of being diagnosed late, when treatment options are more limited, and outcomes are worse. Discrimination and stigma within healthcare settings further prevents SGM individuals from seeking care, contributing to late-stage diagnoses and poorer health outcomes.
One of the biggest obstacles to improving care for SGM individuals is the lack of comprehensive data on sexual orientation and gender identity (SOGI). Most cancer care providers and institutions do not systematically collect this information. As a result, SOGI data is often missing from cancer registries. Without this data, researchers struggle to assess and address the disparities that SGM individuals experience. Clinically, the absence of this information means healthcare providers aren't always able to offer personalized, patient-centered care that truly honors the identities and needs of SGM patients.
A recent study led by Drs Matthew Triplette and Jaimee Heffner from Fred Hutchinson Cancer Center and published in LGBT Health aimed to address this gap. The team interviewed and surveyed a wide range of patients, caregivers, providers, and cancer registry staff to better understand the challenges and opportunities around SOGI data collection in cancer care. Their goal was to find ways to collect this sensitive information that supports holistic, respectful care for SGM individuals.
Overall, the findings emphasize the importance of gathering SOGI data for both individual care and broader public health initiatives while addressing the potential discomfort and discrimination that patients, providers, and staff might face during the process. Participants shared both their support and concerns regarding SOGI data collection. They highlighted the importance of using correct pronouns and gender identity to foster a welcoming and inclusive environment for patients. For instance, one patient said: “using the correct pronouns as you know, saves lives.” However, opinions were more divided on the relevance of sexual orientation in cancer care, with some stakeholders considering it less critical unless directly related to sexual health. Many patients expressed concerns about privacy, discrimination, and discomfort during data collection, indicating the need for careful, sensitive approaches to gathering this information. Patients had variable preferences for being asked SOGI questions by another person versus providing the information on a form. One patient stated, " I think personally I’d rather it be a conversation." However, another participant expressed more apprehension, preferring a less confrontational approach: "I would rather have it in writing in front of me to have an easier out if I freaked out, than having someone face to face asking me these things."
To address these concerns, the researchers suggested adopting a multimodal approach to SOGI data collection, offering patients various ways to provide their information, whether through forms, electronic health records, or direct conversations with healthcare providers. This flexible approach, combined with professional and respectful communication, is essential for building trust and ensuring that SOGI data is collected in a way that respects patients' dignity.
This work was supported by the National Cancer Instiitute.
Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium members Drs. Jaimee Heffner, Matthew Triplette contributed to this study.
Triplette, M., Giustini, N., Anderson, N., Go, T., Scout, N. F. N., & Heffner, J. L. 2024. A Multistakeholder Qualitative Study to Inform Sexual Orientation and Gender Identity Data Collection in the Cancer Care Setting. LGBT health, 10.1089/lgbt.2024.0065. Advance online publication.
Science Spotlight writer Darya Moosavi is a postdoctoral research fellow within Johanna Lampe's research group at Fred Hutch. Darya studies the nuanced connections between diet, gut epithelium, and gut microbiome in relation to colorectal cancer using high-dimensional approaches.
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