Acceptability and Feasibility of Collecting Sexual Orientation and Expanded Gender Identity Data in Urology and Oncology Clinics

Abstract

Purpose: We evaluated the acceptability and feasibility of collecting sexual orientation and gender identity (SOGI) data in oncology and urology clinical settings. Methods: We surveyed 101 urology and 104 oncology clinic patients with a standardized sexual orientation question with six response options, ''lesbian, gay, or homosexual;'' ''straight or heterosexual;'' ''bisexual;'' ''something else;'' ''do not know;'' and ''choose not to disclose.'' Next, we added the sexual orientation question and an expanded gender identity question to the electronic medical record (EMR) and analyzed data on the first 450 urology and 103 oncology patients. Acceptability and feasibility were assessed based on responses to the survey and patient intake forms. Results: In the acceptability survey, only 3% of urology and 4% of oncology patients selected ''choose not to disclose.'' Over 90% of patients in both clinics assessed the sexual orientation question as understandable and easy to answer. In all, 79% of urology and 73% of oncology patients stated they would answer it in their EMR, but only 56% of urology and 54% of oncology patients described the information as important. Sexual minority patients were as likely as heterosexual patients to state they would answer the question. Only 5% of patients selected ''choose not to disclose'' for sexual orientation, and <1% for the expanded gender identity question. Conclusion: Adding SOGI questions to the EMR appears to be acceptable and feasible and the sexual orientation question was understandable to a large majority of urology and oncology patients. Clinical Trials.gov ID: #NCT03343093.

Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices

“…Considering that the 2020 ASCO survey also found more than 30% of respondents believed that their patients would be uncomfortable if asked about their SOGI, widespread discomfort is an important misconception that must be corrected in trainings 19 . A growing body of literature demonstrates not only patient willingness to disclose SOGI, but improved self‐reported health among SGM individuals when they can disclose 31–33 . Addressing underlying discomfort is critical because engaging with SOGI creates vulnerability for patients, clinicians, and staff.…”

Sexual Orientation and Gender Identity Data Collection in Oncology Practice: Findings of an ASCO Survey

“…However, this belief is refuted by a growing body of research. One study reported the majority of both SGM and H/C patients would agree to disclose SO (95%) and GI (99%) in emergency medicine settings, 26 and another study of oncology patients found that the majority of patients across multiple demographic groups had favorable perceptions of being asked SOGI questions. 26 , 27 Importantly, preliminary evidence suggests that disclosure of SOGI to cancer care providers improves self-reported health among SGM cancer patients.…”

“…One study reported the majority of both SGM and H/C patients would agree to disclose SO (95%) and GI (99%) in emergency medicine settings, 26 and another study of oncology patients found that the majority of patients across multiple demographic groups had favorable perceptions of being asked SOGI questions. 26 , 27 Importantly, preliminary evidence suggests that disclosure of SOGI to cancer care providers improves self-reported health among SGM cancer patients. 28 Furthermore, although some patients may feel uncomfortable being asked about SOGI, asking will help to normalize collecting these data to reduce discomfort for H/C individuals in the long term.…”

“…Evidence strongly suggests that SOGI data collection is acceptable to patients in health care settings. 13 , 14 , 26 Unfortunately, the continued failure of many oncology practices and research studies to systematically collect SOGI data perpetuates invisibility of SGM patients and, potentially, fuels disparities. 4 …”

Sexual and Gender Minority Invisibility in Cancer Studies: A Call for Effective Recruitment Methods to Address Cancer Disparities

“…120 It is feasible and acceptable to ask SGM patients with cancer to enter SOGI information at the point of care. 121 Demonstrated success in the development and use of computable phenotypes to identify SGM patients from EHR data could be applied to recruitment for cancer trials. 122 Several studies have leveraged EHR-based approaches for enrollment in cancer trials, 123 but protocols specific to SGM populations-both in cancer trials and at large-are missing.…”