Advancing novel survey tools to increase participation and improve sexual and reproductive health data quality

推进新颖的调查工具，以提高参与度并提高性健康和生殖健康数据质量

• 批准号: 10659727
• 负责人: Heidi Serene Moseson Lidow
• 金额: $ 51.09万
• 依托单位: IBIS REPRODUCTIVE HEALTH
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-21 至 2028-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10659727
• 关键词: Address; Adopted; Anatomy; Birth; Caring; Color; Communities; Contraceptive Agents; Contraceptive Usage; Control Groups; Data; Data Collection; Data Element; Discipline; Disparity; Dropout; Eligibility Determination; Enrollment; Equipment and supply inventories; Exclusion; Fertility; Funding; Gender; Gender Identity; Geography; Goals; HIV; Health; Health Personnel; Healthcare; Incidence; Institute of Medicine (U.S.); Intersex; Knowledge; LGBT Health; Language; Legal Abortion; Logic; Measures; Medical; Methodology; Methods; National Institute of Child Health and Human Development; Organ; Outcome; Participant; Patients; Persons; Policies; Population; Population Research; Pregnancy; Pregnancy Outcome; Proliferating; Provider; Quality of Care; Randomized; Randomized, Controlled Trials; Reporting; Reproductive Health; Research; Research Design; Research Methodology; Research Personnel; Research Support; Respondent; Risk; Risk Factors; Sampling; Sampling Studies; Scientific Advances and Accomplishments; Screening procedure; Sex Behavior; Sexual Health; Sexual and Gender Minorities; Social Network; Strategic Planning; Survey Methodology; Surveys; Testing; Underserved Population; United States; United States National Institutes of Health; Universities; Woman; Youth; abortion; adverse outcome; arm; cis-female; cisgender; clinical care; cost; data quality; design; epidemiologic data; evidence base; experience; field survey; gender affirming care; gender minority group; group intervention; health care service; health data; health disparity; improved; improved outcome; innovation; marginalized population; nonbinary; novel; pregnant; prevent; primary outcome; public health intervention; public health relevance; public health research; racial diversity; randomized trial; recruit; research study; response; screening; sex; tool; transgender; unintended pregnancy; virtual

PROJECT SUMMARY/ABSTRACT The Institute of Medicine’s report on “The health of Lesbian, Gay, Bisexual, and transgender People,” called for NIH-supported research to address the methodological challenges that have impeded research on the health of transgender people – specifically, to improve strategies for reaching, larger, more diverse samples of transgender persons in the United States. Historically, research on sexual and reproductive health (SRH) has excluded or misclassified transgender, nonbinary, and intersex (TNBI) people due to presumptions that pregnancy and related outcomes can be experienced solely by cisgender women. However, TNBI people plan for and carry pregnancies, and thus require high-quality and evidence-based healthcare. Despite this need, existing data on the SRH needs of TNBI populations primarily come from convenience samples-- small in size and/or limited in geographic scope. The dearth of representative data has meant, critically, that SRH providers do not have adequate evidence upon which to rely to ensure that the SRH needs of their TNBI patients are met within existing healthcare services--thereby contributing to lower quality care and SRH disparities among these populations. And while data on transgender and nonbinary people are scarce, data on intersex people are even scarcer. Consequently, this study aims to test methods of improving the research participation, retention, and quality of collected data among TNBI people in the United States. The specific aims include: (1) recruit a large, diverse sample of TNBI people from across the United States, (2) collect longitudinal data on core SRH outcomes, and (3) improve retention and data quality among TNBI participants in SRH research as compared to standard methods. To achieve these aims, we will implement a four-arm, parallel design, randomized control trial that randomizes participants to receipt of zero, one, or two novel survey features in their online survey: a gender-inclusive anatomical organ inventory for screening into survey logic, and/or customizable survey language to personalize their survey experience. The control group will be randomized to screening based on a 2-part gender identity question, and use of standard medical terms. The research will address challenges encountered in previous SRH research with TNBI populations and will contribute to the evidence around best practices for data collection with other populations historically characterized as “hard-to-reach” in the context of SRH, public health research, and clinical care. The evidence generated by this study could have wide-ranging impacts—including refined determination of research and clinical care eligibility, improved research participation, and better healthcare screening and treatment for TNBI populations. Beyond SRH and advancing the evidence-based for TNBI people, this novel survey methodologies tested in this study could be applied broadly to advance public health research approaches and improve the accuracy and relevance of data collection with a diverse range of populations and topics.

项目概要/摘要 医学研究所关于“女同性恋、男同性恋、双性恋和跨性别者的健康”的报告呼吁 NIH 支持的研究旨在解决阻碍健康研究的方法学挑战 跨性别者的群体——具体来说，是为了改进获取更大、更多样化样本的策略 从历史上看，美国的跨性别者对性和生殖健康（SRH）的研究一直在进行。 由于以下假设而被排除或错误分类的跨性别者、非二元性别者和双性人 (TNBI) 怀孕和相关结果只能由顺性别女性经历，然而，TNBI 人计划。 怀孕和怀孕，因此需要高质量和基于证据的医疗保健，尽管有这种需要， 关于 TNBI 人群性健康与生殖健康需求的现有数据主要来自便利样本——样本量较小 和/或地理范围有限，这意味着性健康和生殖健康提供者至关重要。 没有足够的证据来确保满足 TNBI 患者的 SRH 需求 现有的医疗保健服务——从而导致护理质量较低和这些服务之间的性健康和生殖健康差异 虽然跨性别者和非二元性别者的数据很少，但双性人的数据却很多。 更稀缺的是，这项研究旨在测试提高研究参与度、保留率的方法， 以及在美国 TNBI 人群中收集的数据的质量 具体目标包括： (1) 招募一名 来自美国各地的大量、多样化的 TNBI 人群样本，(2) 收集核心 SRH 的纵向数据 成果，以及 (3) 与 SRH 研究中的 TNBI 参与者相比，提高保留率和数据质量 为了实现这些目标，我们将实施四臂、并行设计、随机控制。 将参与者随机分配到在线调查中接受零个、一个或两个新颖的调查特征的试验： 包含性别的解剖器官清单，用于筛选调查逻辑和/或可定制的调查 语言来个性化他们的调查体验，对照组将根据情况随机进行筛选。 该研究将解决由两部分组成的性别认同问题和标准医学术语的使用。 在之前针对 TNBI 人群的 SRH 研究中遇到过，并将有助于提供最佳证据 在历史上被描述为“难以接触”的其他人群的数据收集实践 这项研究产生的证据可能具有广泛的性和生殖健康、公共卫生研究和临床护理。 影响——包括精确确定研究和临床护理资格、改进研究 超越 SRH 并推进 TNBI 人群的参与、更好的医疗保健筛查和治疗。 TNBI 人群以证据为基础，本研究中测试的这种新颖的调查方法可以应用 广泛推进公共卫生研究方法并提高数据的准确性和相关性 包含不同人群和主题的集合。