Abstract

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.

中文翻译：

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电子健康记录中的跨性别数据收集：当前概念和问题

摘要

美国有超过 100 万跨性别者，其中 33% 的人报告了与医疗保健提供者的负面经历，其中许多与电子健康记录 (EHR) 中的数据表示有关。我们提出了涉及 EHR 中性和性别相关数据收集的建议和常见缺陷。我们的建议利用患者、医疗提供者和研究人员的需求来优化个体患者体验以及基于 EHR 人群的研究的有效性和可重复性。我们还简要讨论了考虑名称和代词用法对 EHR 的适当补充。我们添加了免责声明，即这些问题比通常假设的要复杂。