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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.

全文翻譯（僅供參考）

與一般人群相比，女同性戀、男同性戀、雙性戀、跨性別者、酷兒、雙性人、無(wú)性戀和所有性和性別少數(shù)群體 (LGBTQIA+) 社區(qū)經(jīng)歷了大量的健康差異。因此，2020 年美國(guó)國(guó)家科學(xué)院、工程院和醫(yī)學(xué)院共識(shí)研究報(bào)告“了解 LGBTQI+ 人群的福祉”得出的結(jié)論是，需要有關(guān)性取向、性別認(rèn)同和雙性人狀態(tài)的數(shù)據(jù)來(lái)為研究提供信息、參與人口活動(dòng)級(jí)監(jiān)控，確定資源分配并制定有效解決這些不平等問(wèn)題的政策1。

如何收集數(shù)據(jù)

醫(yī)療保健中性取向和性別認(rèn)同數(shù)據(jù)的常規(guī)收集在種族和地理多樣化的美國(guó)社區(qū)中具有很高的接受度。一項(xiàng)針對(duì)初級(jí)保健患者的研究，其中大多數(shù)是順性別者和異性戀者，以及大多數(shù)是黑人、土著和有色人種，報(bào)告說(shuō)大多數(shù)受訪者認(rèn)為他們的性取向和性別認(rèn)同對(duì)于他們的醫(yī)療服務(wù)提供者來(lái)說(shuō)很重要，回答了問(wèn)題注冊(cè)時(shí)關(guān)于這些，并表示愿意在以后再次回答這些問(wèn)題2. 一些患者可能有隱私問(wèn)題，并從了解適用于其性取向和性別認(rèn)同數(shù)據(jù)的保密保護(hù)措施中受益?？缧詣e和性別多樣化的社區(qū)成員以及醫(yī)療保健專(zhuān)業(yè)人員描述了標(biāo)準(zhǔn)化的性別確認(rèn)攝入表格和電子健康記錄 (EHR) 的重要性，這些表格和電子健康記錄 (EHR) 有助于要求和使用每個(gè)患者的正確姓名和代詞3。

醫(yī)療保健組織可以采用完善的數(shù)據(jù)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語(yǔ)言將營(yíng)造有利于收集有關(guān)性取向、性別認(rèn)同和性發(fā)展4數(shù)據(jù)的環(huán)境。應(yīng)在社區(qū)需求和組織能力評(píng)估、綜合服務(wù)模型開(kāi)發(fā)、治療方案采用和創(chuàng)傷知情方法5的背景下在 EHR 中收集數(shù)據(jù)。

醫(yī)療保健組織可以從行政、臨床、注冊(cè)和信息技術(shù)部門(mén)中確定內(nèi)部員工的支持者，以共同制定實(shí)施時(shí)間表和協(xié)議6。計(jì)劃-執(zhí)行-研究-行動(dòng)循環(huán)和其他持續(xù)的質(zhì)量改進(jìn)方法，可以在數(shù)據(jù)收集效率和有效性方面進(jìn)行迭代增強(qiáng)。與當(dāng)?shù)厣鐓^(qū)合作，為常規(guī)人口登記表和臨床診治定制標(biāo)準(zhǔn)化的性取向和性別認(rèn)同問(wèn)題詞干和響應(yīng)選項(xiàng)，可以創(chuàng)造一種更具文化和語(yǔ)言共鳴的患者體驗(yàn)。

輸入電子病歷的數(shù)據(jù)收集可以通過(guò)紙質(zhì)表格、電子平板電腦或遠(yuǎn)程醫(yī)療方式進(jìn)行，正確的姓名和代詞可以與實(shí)驗(yàn)室檢測(cè)和電子藥物處方單7 相關(guān)聯(lián)，如 HIV 暴露前預(yù)防 (PrEP) 或性別肯定激素療法。內(nèi)部信息技術(shù)設(shè)計(jì)能力有限的組織可以詢(xún)問(wèn)他們的 EHR 供應(yīng)商是否有預(yù)先存在的性取向和性別認(rèn)同定制選項(xiàng)來(lái)適應(yīng)他們獨(dú)特的工作流程。可能的功能包括 EHR 橫幅、警報(bào)、自動(dòng)稱(chēng)呼、信件模板和患者說(shuō)明，這些說(shuō)明可在每個(gè)上下文中有效顯示正確的名稱(chēng)和代詞6。

以患者為中心的護(hù)理

將患者的登記性別與假定器官任意關(guān)聯(lián)的電子病歷會(huì)導(dǎo)致臨床錯(cuò)誤和保險(xiǎn)報(bào)銷(xiāo)被拒絕以進(jìn)行必要的干預(yù)和預(yù)防性篩查，例如未能提供或支付保留子宮頸的跨男性患者的常規(guī)宮頸巴氏涂片檢查8。相反，EHR 解剖清單允許護(hù)理團(tuán)隊(duì)記錄和跟蹤保留的器官和身體變化；反過(guò)來(lái)，解剖清單可以與臨床決策支持算法協(xié)同工作，以指導(dǎo)以患者為中心的初級(jí)和預(yù)防保健。

目前有許多 EHR 數(shù)據(jù)應(yīng)用來(lái)改善對(duì) LGBTQIA+ 人群的護(hù)理（表1）。性別身份信息和解剖庫(kù)存可以方便的與更好的精神衛(wèi)生成果，其中包括較低的自殺行為相關(guān)的性別的肯定心理，藥物和外科手術(shù)發(fā)展相適應(yīng)的交付9，10，11。了解患者的性取向身份和行為對(duì)于有效咨詢(xún) SARS-CoV-2 傳播風(fēng)險(xiǎn)很重要12. 收集患者性取向和性別認(rèn)同數(shù)據(jù)有助于識(shí)別醫(yī)療機(jī)構(gòu)內(nèi)部的差異，包括順性別少數(shù)女性與順性別直女之間的宮頸癌篩查率，以及跨性別男性與順性別女性的宮頸癌篩查率13。

健康公平

新的文化響應(yīng)數(shù)據(jù)收集機(jī)會(huì)有望進(jìn)一步推進(jìn) LGBTQIA+ 健康公平（表1），例如通過(guò)提高對(duì) SARS-CoV-2 在測(cè)試、感染、結(jié)果和疫苗接種方面的差異的理解和減少在性少數(shù)群體和性別少數(shù)群體中的差異經(jīng)歷不利的健康社會(huì)決定因素14．將來(lái)，在治療嚴(yán)重痤瘡的異維A酸處方注冊(cè)過(guò)程中納入性別認(rèn)同數(shù)據(jù)收集可以防止可能懷孕但不能識(shí)別為女性的人群的致畸性15。

創(chuàng)新的預(yù)測(cè)算法開(kāi)始將識(shí)別男男性行為者的 EHR 信息與性傳播感染陽(yáng)性率和其他 HIV 風(fēng)險(xiǎn)因素的數(shù)據(jù)聯(lián)系起來(lái)，然后應(yīng)用機(jī)器學(xué)習(xí)來(lái)更有效地識(shí)別 PrEP 16 的潛在候選人。性取向和性別認(rèn)同數(shù)據(jù)收集是提高全球（包括撒哈拉以南非洲）性少數(shù)群體和性別少數(shù)群體的護(hù)理質(zhì)量和艾滋病毒流行控制的關(guān)鍵促進(jìn)因素。這可能發(fā)生在衛(wèi)生部門(mén)領(lǐng)導(dǎo)的篩查方案中，作為識(shí)別艾滋病毒風(fēng)險(xiǎn)最高的患者的一種手段，因此需要優(yōu)先考慮 PrEP 17. 同樣，與患有 DSDI 的人合作，制定有關(guān)性別發(fā)展差異和雙性變異 (DSDI) 的經(jīng)過(guò)驗(yàn)證的人口統(tǒng)計(jì)問(wèn)題，將有助于提供敏感和有效的護(hù)理18。

培訓(xùn)和政策

與數(shù)據(jù)收集計(jì)劃并行的一項(xiàng)重要工作是培訓(xùn)醫(yī)療保健人員。大多數(shù)臨床醫(yī)生不與患者討論性取向或性別認(rèn)同，因?yàn)樗麄冋J(rèn)為這些信息與護(hù)理缺乏相關(guān)性，擔(dān)心引起患者不適或冒犯，以及缺乏進(jìn)行這些對(duì)話的臨床經(jīng)驗(yàn)、知識(shí)和語(yǔ)言19。在過(guò)去十年中，性和性別少數(shù)群體健康教育越來(lái)越多地?cái)U(kuò)展到所有醫(yī)療保健專(zhuān)業(yè)人員，包括通過(guò)強(qiáng)制性培訓(xùn)20. 臨床醫(yī)生教育應(yīng)強(qiáng)調(diào)掌握與性取向、性別認(rèn)同和性發(fā)展相關(guān)的基本概念，與 LGBTQIA+ 患者進(jìn)行敏感有效的溝通，并為 LGBTQIA+ 社區(qū)營(yíng)造包容和肯定的醫(yī)療環(huán)境4。應(yīng)要求所有醫(yī)療保健人員接受培訓(xùn)，以減輕對(duì)屬于性和性別少數(shù)群體的患者的隱性偏見(jiàn)的不利影響21。

國(guó)家、區(qū)域和組織層面的包容性指導(dǎo)方針和保護(hù)政策可以產(chǎn)生變革性的好處。自 2016 年以來(lái)，美國(guó)衛(wèi)生資源和服務(wù)管理局的初級(jí)衛(wèi)生保健局要求為美國(guó)近 3000 萬(wàn)人提供服務(wù)的所有聯(lián)邦合格衛(wèi)生中心每年報(bào)告患者的性取向和性別認(rèn)同數(shù)據(jù)22。該政策的實(shí)施使一些醫(yī)療保健組織能夠發(fā)現(xiàn)基于性取向、性別認(rèn)同或兩者在宮頸癌、抑郁癥和煙草使用篩查率方面的差異13. 美國(guó)城市層面的性取向和性別認(rèn)同非歧視法與聯(lián)邦合格健康中心的電子病歷中更完整的性取向和性別認(rèn)同數(shù)據(jù)相關(guān)23。這一發(fā)現(xiàn)表明，保護(hù) LGBTQIA+ 人群的聯(lián)邦非歧視法律，例如美國(guó)眾議院于 2021 年 2 月通過(guò)并在撰寫(xiě)本文時(shí)正在參議院審議的平等法案，可能有助于在全國(guó)范圍內(nèi)實(shí)現(xiàn)更統(tǒng)一的患者數(shù)據(jù)完整性，以及確定地方、州和國(guó)家公共衛(wèi)生干預(yù)的其他差異。

生活經(jīng)歷

通過(guò)他們的生活經(jīng)驗(yàn)，具有不同性取向、性別認(rèn)同和性發(fā)展的人能夠獨(dú)特地準(zhǔn)備指導(dǎo) EHR 相關(guān)技術(shù)、協(xié)議和政策設(shè)計(jì)，以解決 LGBTQIA+ 健康不平等問(wèn)題。LGBTQIA+ 人群的經(jīng)濟(jì)補(bǔ)償包容應(yīng)該發(fā)生在三個(gè)重要的環(huán)境中24。第一個(gè)由與醫(yī)療保健相關(guān)的社區(qū)咨詢(xún)委員會(huì)組成，它們對(duì)組織領(lǐng)導(dǎo)和服務(wù)提供產(chǎn)生有意義的影響，以滿(mǎn)足特定人群的需求。第二個(gè)是醫(yī)療編碼板，用于告知衛(wèi)生服務(wù)的行政分類(lèi)和計(jì)費(fèi)。最后，LGBTQIA+ 人群在健康數(shù)據(jù)標(biāo)準(zhǔn)開(kāi)發(fā)組織中的代表，例如健康七級(jí)國(guó)際性別和諧項(xiàng)目25，將促進(jìn)美國(guó)和全球可互操作、高質(zhì)量和文化響應(yīng)的 EHR 系統(tǒng)的持續(xù)改進(jìn)和擴(kuò)展。

THE

END

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