Community members’ perspectives on sexual orientation and gender identity data collection in health-care settings

More than 13 million adults in the United States identify as a sexual or gender minority (SGM). This study aimed to describe the barriers and facilitators to SOGI data collection in health-care settings, looking to understand current and past practices with a goal of improving future data collection. With the aid of community-based organizations (CBOs) focused either on cancer or LGBTQ+ issues, 31 individuals were recruited to participate in 4 focus groups. Focus groups were analyzed using thematic analysis, and 5 themes were identified: barriers to SOGI data collection; facilitators to SOGI data collection; discrimination; disclosing SOGI status; shifting landscape of SOGI status and data collection; and practical experiences of SOGI data collection. More than half of the participants identified as Black/African American, and the majority of focus groups participants were sexual or gender minorities. Our study identified gaps in current SOGI data collection practices, experiences of harm in disclosure, and areas for growth and improvement in the overall health experiences for SGM individuals.