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.

项目摘要/摘要 医学研究所关于“女同性恋、男同性恋、双性恋和变性人的健康”的报告呼吁， NIH支持的研究，以解决阻碍健康研究的方法学挑战 特别是，为了改善策略，以达到更大，更多样化的样本， 美国的跨性别者。从历史上看，关于性健康和生殖健康的研究 排除或错误分类跨性别，非二元和双性（TNBI）的人，由于假设， 只有顺性别妇女才能经历怀孕和相关后果。然而，TNBI的人计划 怀孕和携带，因此需要高质量和循证的医疗保健。尽管有这种需要， 关于TNBI人群性健康和生殖健康需求的现有数据主要来自方便样本--规模较小 和/或地理范围受限。重要的是，代表性数据的缺乏意味着性健康和生殖健康提供者 没有足够的证据可以依赖来确保TNBI患者的SRH需求得到满足 在现有的医疗保健服务中-从而导致这些人之间的保健质量较低和性健康和生殖健康差距 人口。虽然关于变性人和非二元性人的数据很少，但关于双性人的数据却很少。 更是罕见因此，本研究旨在测试提高研究参与，保留， 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TNBI人群的大样本，（2）收集关于核心SRH的纵向数据 结果，以及（3）提高TNBI参与者在SRH研究中的保留和数据质量， 标准方法。为了实现这些目标，我们将实施四臂，平行设计，随机对照 一项试验，将参与者随机分配到他们的在线调查中接收零个，一个或两个新的调查功能： 性别包容的解剖器官清单，用于筛选到调查逻辑和/或可定制的调查中 语言来个性化他们的调查体验。对照组将根据以下因素随机接受筛选： 一个由两部分组成的性别认同问题，以及标准医学术语的使用。研究将解决挑战 在以前的TNBI人群SRH研究中遇到的，并将有助于最好的证据 与历史上被定性为“难以接触”的其他人群一起收集数据的做法 SRH，公共卫生研究和临床护理。这项研究产生的证据可能具有广泛的 影响-包括研究和临床护理资格的精确确定， 参与，以及更好的医疗保健筛查和治疗TNBI人群。超越性健康和生殖健康， 基于TNBI人群的实证研究，本研究中测试的这种新的调查方法可以应用于 广泛地推进公共卫生研究方法，提高数据的准确性和相关性 收藏了各种各样的人群和主题。