Patient perspectives on sexual orientation and gender identity data collection in cancer care settings

Sexual orientation and gender identity (SOGI) data collection is considered an essential component of patient-centered cancer care. The objective of this study was to understand attitudes toward and understanding of SOGI data collection among patients receiving care at a comprehensive cancer center.

Surveys assessing attitudes toward SOGI data collection and acceptability of the collection methods were sent to 250 patients 2 months after participating in a pilot trial of SOGI data collection from September through December 2023. We also conducted a comparison of the acceptability of two standardized approaches to SOGI demographic questions. We purposively oversampled sexual and gender minority (SGM) patients to compare survey responses between respondents who did and did not identify as lesbian, gay, bisexual, transgender, and/or queer/questioning (LGBTQ +).

Of 91 survey respondents (response rate 36%), average age was 58 years, the majority were assigned female at birth (69%) and white (71%), and 24% identified as LGBTQ + . Overall, participants reported high levels of agreement on SOGI data collection importance and acceptability. Survey responses suggested LGBTQ + participants considered SOGI data collection more important to collect and more comfortable to answer than participants who did not identify as LGBTQ + . For both groups, results suggest more limited response choices may be more understandable and acceptable than more extensive response choices.

There were generally positive attitudes toward SOGI data collection among patients undergoing cancer-related care, with greater acceptability among those who identified as LGBTQ + . Further efforts in patient education and refinement of acceptable SOGI questions may be necessary to improve universal understanding and acceptability.