电子健康记录作为 LGBTQIA+ 人群的公平工具 | Nature Medicine

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Collection of data on sexual orientation, gender identity and intersex status will help to reduce health disparities that affect people from sexual and gender minority communities.

Compared to the general population, lesbian, gay, bisexual, transgender, queer, intersex, asexual and all sexual and gender minority (LGBTQIA+) communities experience a multitude of health disparities. As a result, the 2020 US National Academies of Sciences, Engineering, and Medicine Consensus Study Report, “Understanding the Wellbeing of LGBTQI+ Populations,” concluded that data on sexual orientation, gender identity and intersex status are required to inform research, engage in population-level monitoring, determine resource allocation and set policies that effectively address these inequities1. 

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How to collect the data

Routine collection of sexual orientation and gender identity data in healthcare has high acceptability across racially and geographically diverse US communities. A study of primary care patients, most of whom were cisgender and straight, as well as mostly Black, Indigenous and people of color, reported that most respondents believed that their sexual orientation and gender identity are important for their medical provider to know, answered questions about these at registration and expressed willingness to answer them again in the future2. Some patients may have privacy concerns and benefit from understanding the confidentiality safeguards that apply to their sexual orientation and gender identity data. Transgender and gender diverse community members, as well as healthcare professionals, describe the importance of standardized gender-affirming intake forms and electronic health records (EHRs) that facilitate asking for and using each patient’s correct name and pronouns3.

Healthcare organizations can adopt well-established strategies for data collection. For example, revising language for inclusivity in patient-facing materials, forms and processes will foster environments conducive to collecting data about sexual orientation, gender identity and sex development4. Data should be collected in EHRs in the context of community needs and organizational capacity assessments, integrated service model development, treatment protocol adoption and trauma-informed approaches5.

Healthcare organizations can identify internal staff champions from administrative, clinical, registration and information technology departments to collaboratively delineate implementation timelines and protocols6. Plan–Do–Study–Act cycles, and other continuous quality improvement methods, enable iterative enhancements in data collection efficiency and effectiveness. Tailoring of standardized sexual orientation and gender identity question stems and response options in collaboration with local communities, for both routine demographic registration forms and clinical encounters, can create a more culturally and linguistically resonant patient experience.

Data collection for entry into EHRs may occur via paper forms, electronic tablets or telehealth modalities, and correct names and pronouns can be linked to laboratory testing and electronic medication prescribing orders7, as for HIV pre-exposure prophylaxis (PrEP) or gender-affirming hormone therapy. Organizations with more limited internal information technology design capabilities can inquire whether their EHR vendor has pre-existing sexual orientation and gender identity customization options to suit their unique workflows. Possible features include EHR banners, alerts, automated salutations, letter templates and patient instructions that effectively display correct names and pronouns in each context6.

Patient-centered care

EHRs that arbitrarily associate patients’ registration sex with presumed organs can cause clinical errors and insurance reimbursement denials for necessary interventions and preventative screenings, such as failing to offer or pay for routine cervical Pap tests with trans masculine patients who retain a cervix8. Instead, EHR anatomical inventories allow care teams to note and track retained organs and body modifications; in turn, anatomical inventories can synergize with clinical decision support algorithms to guide patient-centered primary and preventive care.

There are numerous current applications of EHR data to improve care for LGBTQIA+ people (Table 1). Gender identity information and anatomical inventories can facilitate developmentally appropriate delivery of gender-affirming psychosocial, pharmacological and surgical interventions that are associated with better mental health outcomes, including lower suicidality9,10,11. Knowledge of patients’ sexual orientation identity and behavior is important for effective counseling regarding SARS-CoV-2 transmission risks12. Collection of patient sexual orientation and gender identity data has enabled the identification of disparities within healthcare organizations, including in rates of cervical cancer screening among cisgender sexual minority women compared to cisgender straight women, and among transgender men compared with cisgender women13.

Health equity

Emerging opportunities for culturally responsive data collection hold promise for further advancing LGBTQIA+ health equity (Table 1), for example by improving understanding of and reducing disparities related to SARS-CoV-2 in testing, infection, outcomes and vaccination among sexual and gender minority populations experiencing adverse social determinants of health14. In the future, incorporating gender identity data collection during isotretinoin prescription registration for treating severe acne could prevent teratogenicity among people who can become pregnant and do not identify as female15.

Innovative prediction algorithms are starting to link EHR information identifying men who have sex with men to data on sexually transmitted infection positivity and other HIV risk factors, and then applying machine learning to more effectively identify potential candidates for PrEP16. Sexual orientation and gender identity data collection is a key facilitator of improving quality of care and HIV epidemic control for sexual and gender minority communities globally, including in sub-Saharan Africa. This can occur within screening protocols led by health departments as a means to identify patients most at risk for HIV and therefore in need of being prioritized for PrEP17. Likewise, developing validated demographic questions pertaining to differences of sex development and intersex variations (DSDI), in partnership with people who have DSDI, will facilitate delivery of sensitive and effective care18.

Training and policy

A critical parallel effort to data collection initiatives is training of the healthcare workforce. Most clinicians do not discuss sexual orientation or gender identity with patients, owing to a belief that this information lacks relevance to care, concern about causing patient discomfort or offense, and a lack of the clinical experience, knowledge and language to have these conversations19. Over the past decade, education in sexual and gender minority health has increasingly expanded toward reaching all healthcare professionals, including through mandatory trainings20. Clinician education ought to emphasize mastery of basic concepts related to sexual orientation, gender identity and sex development, sensitive and effective communication with LGBTQIA+ patients, and building inclusive and affirming healthcare environments for LGBTQIA+ communities4. All healthcare staff should be required to have training to mitigate the adverse impact of implicit bias against patients who are members of sexual and gender minorities21.

Inclusive guidelines and protective policies at national, regional and organizational levels can yield transformative benefits. Since 2016, the US Health Resources and Services Administration’s Bureau of Primary Health Care has required all federal qualified health centers, serving almost 30 million people in the United States, to report patient sexual orientation and gender identity data on an annual basis22. Implementation of this policy enabled several healthcare organizations to detect disparities based on sexual orientation, gender identity or both in screening rates for cervical cancer, depression and tobacco use13. US city-level sexual orientation and gender identity nondiscrimination laws are associated with more complete sexual orientation and gender identity data in EHRs at federally qualified health centers23. This finding suggests that federal nondiscrimination laws protecting LGBTQIA+ people, such as the Equality Act passed by the US House of Representatives in February 2021 and under consideration in the Senate at the time of writing, could help achieve more uniform patient data completeness across the country, as well as the identification of additional disparities for local, state and national public health intervention.

Lived experience

Through their lived experience, people with diverse sexual orientations, gender identities and sex development are uniquely poised to guide EHR-related technology, protocol and policy design that addresses LGBTQIA+ health inequities. Financially compensated inclusion of LGBTQIA+ people ought to occur in three important settings24. The first consists of healthcare-associated community advisory boards that meaningfully influence organizational leadership and service delivery for meeting population-specific needs. The second is medical coding boards that inform administrative classification and billing for health services. Finally, representation of LGBTQIA+ people within health data standards development organizations, such as the Health Level Seven International Gender Harmony Project25, will facilitate the ongoing refinement and scale-up of interoperable, high-quality and culturally responsive EHR systems in the United States and across the globe.

全文翻译（仅供参考）

与一般人群相比，女同性恋、男同性恋、双性恋、跨性别者、酷儿、双性人、无性恋和所有性和性别少数群体 (LGBTQIA+) 社区经历了大量的健康差异。因此，2020 年美国国家科学院、工程院和医学院共识研究报告“了解 LGBTQI+ 人群的福祉”得出的结论是，需要有关性取向、性别认同和双性人状态的数据来为研究提供信息、参与人口活动级监控，确定资源分配并制定有效解决这些不平等问题的政策1。

如何收集数据

医疗保健中性取向和性别认同数据的常规收集在种族和地理多样化的美国社区中具有很高的接受度。一项针对初级保健患者的研究，其中大多数是顺性别者和异性恋者，以及大多数是黑人、土著和有色人种，报告说大多数受访者认为他们的性取向和性别认同对于他们的医疗服务提供者来说很重要，回答了问题注册时关于这些，并表示愿意在以后再次回答这些问题2. 一些患者可能有隐私问题，并从了解适用于其性取向和性别认同数据的保密保护措施中受益。跨性别和性别多样化的社区成员以及医疗保健专业人员描述了标准化的性别确认摄入表格和电子健康记录 (EHR) 的重要性，这些表格和电子健康记录 (EHR) 有助于要求和使用每个患者的正确姓名和代词3。

医疗保健组织可以采用完善的数据收集策略。例如，修改面向患者的材料、形式和流程中的包容性语言将营造有利于收集有关性取向、性别认同和性发展4数据的环境。应在社区需求和组织能力评估、综合服务模型开发、治疗方案采用和创伤知情方法5的背景下在 EHR 中收集数据。

医疗保健组织可以从行政、临床、注册和信息技术部门中确定内部员工的支持者，以共同制定实施时间表和协议6。计划-执行-研究-行动循环和其他持续的质量改进方法，可以在数据收集效率和有效性方面进行迭代增强。与当地社区合作，为常规人口登记表和临床诊治定制标准化的性取向和性别认同问题词干和响应选项，可以创造一种更具文化和语言共鸣的患者体验。

输入电子病历的数据收集可以通过纸质表格、电子平板电脑或远程医疗方式进行，正确的姓名和代词可以与实验室检测和电子药物处方单7 相关联，如 HIV 暴露前预防 (PrEP) 或性别肯定激素疗法。内部信息技术设计能力有限的组织可以询问他们的 EHR 供应商是否有预先存在的性取向和性别认同定制选项来适应他们独特的工作流程。可能的功能包括 EHR 横幅、警报、自动称呼、信件模板和患者说明，这些说明可在每个上下文中有效显示正确的名称和代词6。

以患者为中心的护理

将患者的登记性别与假定器官任意关联的电子病历会导致临床错误和保险报销被拒绝以进行必要的干预和预防性筛查，例如未能提供或支付保留子宫颈的跨男性患者的常规宫颈巴氏涂片检查8。相反，EHR 解剖清单允许护理团队记录和跟踪保留的器官和身体变化；反过来，解剖清单可以与临床决策支持算法协同工作，以指导以患者为中心的初级和预防保健。

目前有许多 EHR 数据应用来改善对 LGBTQIA+ 人群的护理（表1）。性别身份信息和解剖库存可以方便的与更好的精神卫生成果，其中包括较低的自杀行为相关的性别的肯定心理，药物和外科手术发展相适应的交付9，10，11。了解患者的性取向身份和行为对于有效咨询 SARS-CoV-2 传播风险很重要12. 收集患者性取向和性别认同数据有助于识别医疗机构内部的差异，包括顺性别少数女性与顺性别直女之间的宫颈癌筛查率，以及跨性别男性与顺性别女性的宫颈癌筛查率13。

健康公平

新的文化响应数据收集机会有望进一步推进 LGBTQIA+ 健康公平（表1），例如通过提高对 SARS-CoV-2 在测试、感染、结果和疫苗接种方面的差异的理解和减少在性少数群体和性别少数群体中的差异经历不利的健康社会决定因素14．将来，在治疗严重痤疮的异维A酸处方注册过程中纳入性别认同数据收集可以防止可能怀孕但不能识别为女性的人群的致畸性15。

创新的预测算法开始将识别男男性行为者的 EHR 信息与性传播感染阳性率和其他 HIV 风险因素的数据联系起来，然后应用机器学习来更有效地识别 PrEP 16 的潜在候选人。性取向和性别认同数据收集是提高全球（包括撒哈拉以南非洲）性少数群体和性别少数群体的护理质量和艾滋病毒流行控制的关键促进因素。这可能发生在卫生部门领导的筛查方案中，作为识别艾滋病毒风险最高的患者的一种手段，因此需要优先考虑 PrEP 17. 同样，与患有 DSDI 的人合作，制定有关性别发展差异和双性变异 (DSDI) 的经过验证的人口统计问题，将有助于提供敏感和有效的护理18。

培训和政策

与数据收集计划并行的一项重要工作是培训医疗保健人员。大多数临床医生不与患者讨论性取向或性别认同，因为他们认为这些信息与护理缺乏相关性，担心引起患者不适或冒犯，以及缺乏进行这些对话的临床经验、知识和语言19。在过去十年中，性和性别少数群体健康教育越来越多地扩展到所有医疗保健专业人员，包括通过强制性培训20. 临床医生教育应强调掌握与性取向、性别认同和性发展相关的基本概念，与 LGBTQIA+ 患者进行敏感有效的沟通，并为 LGBTQIA+ 社区营造包容和肯定的医疗环境4。应要求所有医疗保健人员接受培训，以减轻对属于性和性别少数群体的患者的隐性偏见的不利影响21。

国家、区域和组织层面的包容性指导方针和保护政策可以产生变革性的好处。自 2016 年以来，美国卫生资源和服务管理局的初级卫生保健局要求为美国近 3000 万人提供服务的所有联邦合格卫生中心每年报告患者的性取向和性别认同数据22。该政策的实施使一些医疗保健组织能够发现基于性取向、性别认同或两者在宫颈癌、抑郁症和烟草使用筛查率方面的差异13. 美国城市层面的性取向和性别认同非歧视法与联邦合格健康中心的电子病历中更完整的性取向和性别认同数据相关23。这一发现表明，保护 LGBTQIA+ 人群的联邦非歧视法律，例如美国众议院于 2021 年 2 月通过并在撰写本文时正在参议院审议的平等法案，可能有助于在全国范围内实现更统一的患者数据完整性，以及确定地方、州和国家公共卫生干预的其他差异。

生活经历

通过他们的生活经验，具有不同性取向、性别认同和性发展的人能够独特地准备指导 EHR 相关技术、协议和政策设计，以解决 LGBTQIA+ 健康不平等问题。LGBTQIA+ 人群的经济补偿包容应该发生在三个重要的环境中24。第一个由与医疗保健相关的社区咨询委员会组成，它们对组织领导和服务提供产生有意义的影响，以满足特定人群的需求。第二个是医疗编码板，用于告知卫生服务的行政分类和计费。最后，LGBTQIA+ 人群在健康数据标准开发组织中的代表，例如健康七级国际性别和谐项目25，将促进美国和全球可互操作、高质量和文化响应的 EHR 系统的持续改进和扩展。

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