Problem
The absence of inclusive and comprehensive sex and gender identity documentation in electronic medical records (EMRs) represents a major structural barrier to equitable healthcare access for trans and non-binary (TNB) individuals in Switzerland. Despite the significance of this issue, empirical data on the lived experiences of TNB individuals remain limited.
Methods
This cross-sectional study aimed to describe the experiences of TNB individuals regarding documentation of and communication about sex and gender identity, at the structural, interpersonal and individual levels, as well as self-reported healthcare avoidance. Data were collected with an online survey assessing structural factors (documentation accuracy, form inclusivity, ease of data modification, provider knowledge), interpersonal factors (respectful communication, perceived rejection, breach of confidentiality, medical harm) and individual-level factors (disclosure safety, disclosure of gender identity, negative expectations, non-disclosure behavior), and healthcare avoidance.
Analyses were conducted by gender identity (woman, man, non-binary, multiple – grouping individuals who selected more than one gender identity) and by healthcare setting (primary care, specialized care, emergency care, inpatient care, and mental health care).
Results
Analyses of the answers from 156 participants revealed significant heterogeneity in experiences based on both patient’s gender identity and healthcare setting. Specifically, non-binary and multiple gender individuals reported experiencing significantly more adverse events, including misgendering, the use of incorrect sex/gender attributes, and encountering non-inclusive data collection processes.
Furthermore, differences were observed across settings and professional roles: adverse experiences were reported less frequently in gender clinics and mental health settings compared to non-gender clinics and emergency departments. Significant knowledge gaps among healthcare providers regarding TNB health were identified, particularly among general practitioners and emergency department physicians, while psychologists received notably higher ratings.
In total, 41% of participants delayed or avoided care due to fear of discrimination—nearly twice the rate reported in US data and six times higher than the general Swiss population.
Conclusion
Results highlight systemic challenges requiring multi-level structural interventions: reforms to health information systems, targeted provider training, and enhanced patient control over identity data. These findings will inform the development of evidence-based recommendations to improve the documentation of sex and gender identity in medical records in Switzerland.
