Interviews with patients and providers on transgender and gender nonconforming health data collection in the electronic health record

Purpose: Meaningful use (MU) and Uniform Data Systems (UDSs) are calling for the collection of gender identity (GI) in electronic health record (EHR) systems; however, many transgender and nonconforming (TGNC) patients may not feel safe disclosing their GI and the data collection is not designed to guide care provision. This study explores the complexities surrounding the inclusion of GI in EHR data collection and how it can best serve patients and providers. Methods: Using a semistructured interview format, TGNC patients (n=7) and providers (n=5) who care for TGNC patients were asked about data collection procedures and the use of these data within community health centers in Oregon. Using a constant comparative data analysis methodology, interview transcripts were coded for emergent concepts until overlapping themes were identified. Results: Both patients and providers expressed a need for the EHR to expand upon MU and UDS-recommended fields to include current pronouns and name and gender identifiers in a forward-facing display to prevent misgendering by clinic staff and providers. Furthermore, they both cited the need for a broader range of birth-assigned sex and gender options. TGNC patients and providers disagreed on the scope of health information to be collected as well as who should be tasked with the data collection. Conclusion: These interviews offer us a glimpse into the structural difficulties of creating an EHR system that serves the needs of clinicians while providing safe and culturally competent care to TGNC patients.