Whitman-Walker Institute, Washington, District of Columbia, USA.
Department of Health Policy and Management, George Washington Milken Institute School of Public Health, Washington, District of Columbia, USA.
J Am Med Inform Assoc. 2022 Dec 13;30(1):83-93. doi: 10.1093/jamia/ocac205.
To propose an approach for semantic and functional data harmonization related to sex and gender constructs in electronic health records (EHRs) and other clinical systems for implementors, as outlined in the National Academies of Sciences, Engineering, and Medicine (NASEM) report Measuring Sex, Gender Identity, and Sexual Orientation and the Health Level 7 (HL7) Gender Harmony Project (GHP) product brief "Gender Harmony-Modeling Sex and Gender Representation, Release 1."
Authors from both publications contributed to a plan for data harmonization based upon fundamental principles in informatics, including privacy, openness, access, legitimate infringement, least intrusive alternatives, and accountability.
We propose construct entities and value sets that best align with both publications to allow the implementation of EHR data elements on gender identity, recorded sex or gender, and sex for clinical use in the United States. We include usability- and interoperability-focused reasoning for each of these decisions, as well as suggestions for cross-tabulation for populations.
Both publications agree on core approaches to conceptualization and measurement of sex- and gender-related constructs. However, some clarifications could improve our ability to assess gender modality, alignment (or lack thereof) between gender identity and assigned gender at birth, and address both individual-level and population-level health inequities. By bridging the GHP and NASEM recommendations, we provide a path forward for implementation of sex- and gender-related EHR elements. Suggestions for implementation of gender identity, recorded sex or gender, and sex for clinical use are provided, along with semantic and functional justifications.
为电子健康记录 (EHR) 和其他临床系统中与性别和性别结构相关的语义和功能数据协调提出一种方法,正如美国国家科学院、工程院和医学院 (NASEM) 的报告“衡量性别、性别认同和性取向”和健康水平 7 (HL7) 性别协调项目 (GHP) 产品简介“性别协调-建模性别和性别表示,版本 1”中所述。
来自这两个出版物的作者共同制定了一个数据协调计划,该计划基于信息学中的基本原则,包括隐私、开放性、访问、合法侵权、最小侵入性替代方案和问责制。
我们提出了与这两个出版物最匹配的构建实体和值集,以允许在美国实施与性别认同、记录的性别或性别以及用于临床的性别相关的 EHR 数据元素。我们为这些决策中的每一个都提供了可用性和互操作性重点的推理,以及对人群进行交叉制表的建议。
这两个出版物都同意性别和性别相关结构的概念化和测量的核心方法。然而,一些澄清可以提高我们评估性别模式的能力,以及性别认同和出生时分配的性别之间的一致性(或缺乏一致性),并解决个人和人口层面的健康不平等问题。通过弥合 GHP 和 NASEM 的建议,我们为实施与性别和性别相关的 EHR 元素提供了一条前进的道路。提供了实施性别认同、记录的性别或性别以及用于临床使用的性别的建议,以及语义和功能上的理由。