Race, ethnicity, and language (REL) data collected in clinical settings highlight disparities in healthcare access, disease prevalence, and health outcomes among racial, ethnic, and linguistic minority populations. Accurate REL data can greatly enhance healthcare providers’ ability to identify and address these disparities, guiding the development of targeted policies and interventions that promote health equity. However, existing research primarily reflects expert perspectives, often overlooking the voices of patients. This study centers on patient experiences to inform more inclusive and ethically grounded REL data collection practices.

A qualitative study was conducted through six focus group discussions with participants from five cities in Connecticut (N=50): Hartford, Meriden, New Haven, Norwich, and Torrington. A thematic, inductive analysis was used to identify recurring themes and insights from participants.

Findings revealed that participants’ willingness to disclose REL data is deeply influenced by their trust in the healthcare system, past experiences with healthcare providers, and their understanding of the questions being asked. Key barriers included systemic bias, poor provider communication, inadequate language assistance, and feelings of embarrassment or shame. Furthermore, participants expressed confusion not only about the purpose of REL questions but also regarding the available response options.

Improving REL data collection requires fostering transparent communication, creating culturally inclusive environments, and educating patients about the importance of sharing this information. Addressing systemic inequities and cultivating mutual respect between patients and providers are critical steps toward building trust and ensuring the accurate and complete reporting of REL data.