Required Sexual Orientation and Gender Identity Reporting by US Health Centers: First-Year Data

Abstract

Objectives. To assess the performance of US health centers during the first year of required sexual orientation and gender identity (SOGI) data reporting and to estimate the baseline proportion of lesbian, gay, bisexual, and transgender patients accessing health centers. Methods. We conducted a secondary analysis of SOGI data from 2016. These data were reported by 1367 US health centers caring for 25 860 296 patients in the United States and territories. Results. SOGI data were missing for 77.1% and 62.8% of patients, respectively. Among patients with data, 3.7% identified as lesbian, gay, bisexual, or something else; 0.4% identified as transgender male or female; 27.5% did not disclose their sexual orientation; and 9.3% did not disclose their gender identity. Conclusions. Although health centers had a high percentage of missing SOGI data in the first year of reporting, among those with data, the percentages of lesbian, gay, bisexual, and transgender people were similar to national estimates, and disclosure was more than 70%. Future data collection efforts would benefit from increased training for health centers and improved messaging on the clinical benefits of SOGI data collection and reporting.

A rapid review of gender, sex, and sexual orientation documentation in electronic health records

“… 7 , 8 , 35 Thirteen articles focused on different ways GSSO data can be analyzed in EHR-related SGM research. These included examining the effects of GSSO and sexual partner documentation in EHRs through a pre-post study, 36 retrospective studies, 10 , 37 , 38 and surveys. 39 , 40 Text-mining was applied to show how EHR data can be used to identify transgender and nonbinary patients.…”

“…For GSSO documentation, the 2-step question had led to increased identification of transgender and gender-nonbinary patients, 36 , 38 but the practice varied across settings. 10 , 37 , 39 , 40 For identifying SGM, text-mining algorithms with different combinations of keywords, diagnostic, and billing codes were applied to clinical notes as ways to identify SGM and build lexicons of SGM terms with varying degrees of success. 41–44 One organization had missing SOGI data for 77.1% and 62.8% of patients when introduced in the first year, 10 while another found their documentation of sexual partner gender at 45%.…”

“…6 Organizations where GSSO data are collected are often specialized; they include the Fenway Institute, 7 Department of Veterans Affairs, 8 and PRIDE Study. 9 Still, there are variations in current practices, 10 , 11 and many health organizations have yet to implement policies and practices to collect GSSO data due to multiple barriers. They include a lack of organizational will to address an unfamiliar and confusing issue, competing organizational priorities, and the cost of updating existing EHRs with more modern GSSO definitions.…”

Stakeholder Experiences With Gender Identity Data Capture in Electronic Health Records: Implementation Effectiveness and a Visibility Paradox

“…Similarly, the Institute of Medicine, the Fenway Institute, the Center for American Progress, the Williams Institute, and the San Francisco Department of Public Health have issued recommendations, white papers, and original research with the goal of advancing EHR GI data collection (Bradford et al, 2012; Cahill & Makadon, 2014; Cahill et al, 2014; City and County of San Francisco Department of Public Health, 2013; Conron, Landers, et al, 2014; Conron, Lombardi,& Reisner, 2014). Following years of advocacy that led to the ACA’s Meaningful Use Stage 3 requirements for Medicaid provider capacity to record SO/GI, Grasso et al (2019) analyzed the results to-date and found that of the 1,367 U.S. Health Centers reporting to HRSA’s 2016 Uniform Data System, GI data was reported missing for 68% of patients. This slow uptake indicates major barriers to achieving the benefits ascribed to GI data capture and supports Plemons’ (2019) assessment of the cascading setbacks that 30 years of insurance exclusions have had on current attempts to provide gender-affirming care.…”

Increased Reporting of Sexual Minority Orientation from 2009 to 2017 in England and Implications for Measuring Sexual Minority Health Disparities

“…The limited number of large datasets with sexual orientation questions inhibits examination of how sexual orientation identification changes over time. 6,7 England is one of the few countries that collects large-scale nationally representative data on sexual orientation, including the Longitudinal Study of Young People in England (LSYPE) and the General Practice Patient Survey (GPPS). We validated a synthetic cohort technique-which uses repeated cross-sectional data in the same population to approximate what might be learned from longitudinal data 8 -to estimate within-and betweencohort changes in sexual orientation in the GPPS data, to understand how sexual orientation reporting changed from 2009 to 2017 and the implications for measuring changes in sexual minority health disparities.…”