The health needs of sexual and gender minority (SGM) individuals have increased to national attention and recognized as a health disparity population by the National Institutes of Health. The ability to progress in research, policy, and the provision of evidence-based care for SGMs has been limited by the lack of routine collection of sexual orientation and gender identity (SOGI) data in health care settings. The Institute of Medicine and The Joint Commission have recommended the collection of SOGI information, mandated per the Meaningful Use Stage 3 Guidelines,1,2 for health systems that use electronic health records. While both SGM and heterosexual and cisgender patients have indicated they are comfortable disclosing their SOGI information,3 significant barriers remain for the universal implementation of SOGI data collection, and the most effective methods to collect this information across health care settings have not yet been validated or mandated in state and national registries.
Haider and colleagues4 report on phase 3 of their Emergency Department Query for Patient-Centered Approaches to Sexual Orientation and Gender Identity (EQUALITY) Study to identify the best patient-centered approach for SOGI data collection in emergency departments (EDs). Identifying an efficient and culturally sensitive method for collecting SOGI information in the ED is particularly relevant because, as the authors note, it is a frequent source of care for uninsured and underinsured patients and SGMs are at greater risk for being uninsured compared with their cisgender and heterosexual counterparts.4,5 The authors found SGM patients reported significantly greater satisfaction when SOGI information was collected nonverbally compared with verbally. Why does this matter?
To reduce health disparities among SGM individuals and improve population health surveillance and clinical care, clinicians and health systems must work to provide a safe and welcoming place in which patients feel comfortable sharing their SOGI information. Complex individual, interpersonal, and systemic barriers affect willingness to disclose and willingness to collect SOGI information. Patients have real fears of discrimination, physical safety, and privacy concerns, which can prevent disclosure of sexual orientation, gender identity, or risk behaviors,5,6 particularly in the setting of EDs. Sexual and gender minorities are more likely than their heterosexual and cisgender counterparts to visit the ED for reasons such as intimate partner violence, mental health concerns, substance abuse, and lack of insurance for general preventive health care.7 Lack of culturally sensitive and knowledgeable clinicians can influence patients’ perceptions of safety and confidentiality and impede their ability to discuss all aspects of their health.8 Precision-based, or patient-centered, approaches have shown the efficacy of treating the whole patient and not just the symptoms or the disease. Haider and colleagues4 showed the importance of a patient-centered approach in identifying optimal and evidence-based methods to collect patient SOGI information.
Universal implementation of SOGI data collection remains a challenge in the ED. The collection of SOGI data are not universally mandated and thus was not mandatory for the study sites, and only 18% of patients in the verbal mode and 4% of patients in the nonverbal mode were asked to disclose SOGI information. In addition to patient fears surrounding disclosure, physician and institutional factors often limit the ability to implement SOGI data collection. Clinicians and registrars may assume SOGI information is not relevant to the purpose of a patient’s visit or they may just assume a patient is cisgender or heterosexual. Without SOGI information, clinicians miss an important opportunity to understand the stressors of the patient and their support system and to make appropriate referrals for preventive services. Institutional leadership may be reluctant to mandate the collection of SOGI information if it is not perceived as a priority or if they fear offending patients.9 It is likely that most clinicians lack knowledge of need for and training in how to collect SOGI data as evidenced by a US study of emergency medicine resident program directors who identified only 33% of programs incorporated SGM health into didactic curriculum, with an average of 45 minutes of instruction per year.10 Increased training on SGM health during residency training may increase understanding of the importance of collecting SOGI information as well as increase the cultural competence of future medical professionals.
The patient-centered approach is a notable strength of the EQUALITY Study in addition to the use of a multidisciplinary stakeholder advisory board to develop the study, adding to the generalizability of the findings. However, we note some unanswered questions to be considered for future research. Although the authors noted that staff received training prior to implementation, the standardization of nurse SOGI data collection and checks to ensure fidelity to the inquiry within and across sites was not discussed. Future studies should consider fidelity checks of both modes of inquiry periodically during the intervention. Second, for truly patient-centered care, a personalized approach is recommended. Indeed, the sample of patients in the study, on average, preferred nonverbal inquiry, but it is possible some individuals would prefer the option to choose one or the other, along with the choice not to disclose. Third, the low percentage of gender minority individuals in the study may limit generalizability of results, and future research focused on obtaining gender diverse individuals is warranted before general recommendations are made. Finally, there were slight differences in the mode of nonverbal collection with the use of iPads in Boston, Massachusetts, vs a paper format in Baltimore, Maryland. There was no difference in satisfaction by study site in the unadjusted model; however, differences in nonverbal delivery mode should be considered in future research, with attention paid to mode, patient preference, health literacy, and resource capacity of the local ED.
While patients may be more satisfied when SOGI information is collected nonverbally in the ED, where patients most likely do not have established patient-clinician relationships, to our knowledge there are no present data regarding optimal SOGI collection in other health care settings such as primary care or obstetrics and gynecology. Clinicians may feel uncomfortable inquiring about SOGI information after years of a clinical relationship or may fear upsetting or losing patients. Additionally, patient preference for mode of SOGI data collection may differ in those settings where there is a rapport with the clinic staff. Further research is needed in these settings to ensure trust and satisfaction are maintained or improved.
Haider and colleagues4 have presented a patient-centered approach to examining the optimal mode to collect SOGI information in the ED. The challenge remains to identify the best approaches for SOGI data collection in other clinical contexts and to improve understanding of resources for dissemination. However, it is insufficient to merely collect SOGI data. If the implementation of universal SOGI data collection is to lead to improved health equity for the SGM population, we must act on this information in meaningful ways.
Published: December 28, 2018. doi:10.1001/jamanetworkopen.2018.6457
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2018 Sutter ME et al. JAMA Network Open.
Corresponding Author: Gwendolyn P. Quinn, PhD, Department of Obstetrics and Gynecology, School of Medicine, New York University, 550 First Ave, NBV 9N1-C, New York, NY 10016 (email@example.com).
Conflict of Interest Disclosures: Dr Quinn reported her former employer, Moffitt Cancer Center, received funding from Boehringer Ingelheim for a study of physician knowledge of lung cancer biomarkers for which she served as principal investigator. Dr Quinn did not receive any funds directly from them and it is not related to the content of this commentary. No other disclosures were reported.
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Sutter ME, Schabath MB, Quinn GP. Patients Seeking Care in Emergency Departments Prefer to Nonverbally Disclose Sexual Orientation and Gender Identity—Are We Ready to Act? JAMA Netw Open. 2018;1(8):e186457. doi:10.1001/jamanetworkopen.2018.6457
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