Risks, Benefits, and Importance of Collecting Sexual Orientation and Gender Identity Data in Healthcare Settings: A Multi-Method Analysis of Patient and Provider Perspectives

Purpose: Research suggests that LGBT populations experience barriers to healthcare. Organizations such as the Institute of Medicine recommend routine documentation of sexual orientation (SO) and gender identity (GI) in healthcare, to reduce LGBT disparities. We explore patient views regarding the importance of SO/GI collection, and patient and provider views on risks and benefits of routine SO/GI collection in various settings. Methods: We surveyed LGBT/non-LGBT patients and providers on their views on SO/GI collection. Weighted data were analyzed with descriptive statistics; content analysis was conducted with open-ended responses. Results: One-half of the 1516 patients and 60% of 429 providers were female; 64% of patients and 71% of providers were White. Eighty percent of providers felt that collecting SO data would offend patients, whereas only 11% of patients reported that they would be offended. Patients rated it as more important for primary care providers to know the SO of all patients compared with emergency department (ED) providers knowing the SO of all patients (41.3% vs. 31.6%; P < 0.001). Patients commonly perceived individualized care as an SO/GI disclosure benefit, whereas providers perceived patient-provider interaction improvement as the main benefit. Patient comments cited bias/discrimination risk most frequently (49.7%; N = 781), whereas provider comments cited patient discomfort/offense most frequently (54.5%; N = 433). Conclusion: Patients see the importance of SO/GI more in primary care than ED settings. However, many LGBT patients seek ED care due to factors including uninsurance; therefore, the ED may represent an initial point of contact for SO/GI collection. Therefore, patient-centered approaches to collecting SO/GI are needed. Patients and providers differed in perceived risks and benefits to routine SO/GI collection. Provider training in LGBT health may address patients' bias/discrimination concerns, and ultimately reduce LGBT health disparities.