Visible Lives: Electronic Health Records and the Biomedical Surveillance of Gender Non-Conformity

Recent federal healthcare reforms in the United States incentivized the implementation of electronic health records. Very little research has interrogated how such implementations have impacted care for trans and gender nonconforming (GNC) persons in particular. This dissertation explores the effects of electronic health record (EHR) implementation and data collection in this context. As a case study, it uses focus group and key informant interview data and situates self-reported experiences with EHR infrastructures within broader discursive trajectories of surveillance themes: trans visibility, privacy, security, populations, normalization, and a care of the self. In addition to four focus groups with trans and GNC persons in Chicago, Illinois, 27 key informant interviews were conducted with trans healthcare stakeholders in six major metropolitan areas. Although most stakeholders reported challenges with these systems as they relate to care for trans and GNC patients, interviews revealed disproportionate administrative burdens at smaller, under-resourced providers. Notably, stakeholders reported that, despite various workarounds, clinicians and staff misgender trans and GNC patients in a range of contexts due to inadequate EHR design and development, including a lack of security and privacy mechanisms, and a lack of staff training or capacity. Stakeholders also discussed challenges with knowledge production based on EHR data whereby the most visible in the data may be those that experience less barriers to access care. Focus group participants explained how infrastructural and training gaps reinforce stereotypes, generate involuntary disclosures, and create danger for patients when accessing care or other resources. While numerous participants reported threats to safety and privacy while accessing healthcare, participants assigned male at birth, who are immigrants, HIV positive, and/or Black, reported more violent threats. Participants shared strategies for safe access and the maintenance of gender self-determination in the face of these rigid administrative systems. Over and above prioritization of standardized gender identity data collection, healthcare providers need to address these infrastructural failures and institute measures to ensure safe access, quality care, and the protection of patient privacy and data integrity. Recommendations are provided.