Center for Medical Informatics, Yale University School of Medicine, New Haven, Connecticut, USA.
Population, Health, and Place Program, Spatial Sciences Institute, University of Southern California, Los Angeles, California, USA.
J Am Med Inform Assoc. 2022 Jan 12;29(2):271-284. doi: 10.1093/jamia/ocab136.
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.
美国有超过 100 万跨性别者，其中 33%的人曾在医疗服务提供者那里遭遇负面体验，其中许多与电子健康记录（EHR）中的数据表示有关。我们提出了一些建议和常见的陷阱，涉及 EHR 中的性别相关数据收集。我们的建议利用了患者、医疗服务提供者和研究人员的需求，以优化个体患者体验以及 EHR 基于人群的研究的效果和可重复性。我们还简要讨论了在考虑姓名和代词使用时 EHR 的适当补充。我们需要声明的是，这些问题比人们通常认为的要复杂。我们的结论是，在当地跨性别者和性别多样化者与医疗服务提供者之间进行合作，以及在术语和标准委员会中纳入跨性别者和性别多样化者，对于转变跨性别者和性别多样化者健康领域的范式至关重要。
