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，同性恋，双性恋和变性人的健康”的报告，要求 NIH支持的研究以解决阻碍健康研究的方法论挑战 跨性别者 - 特别是为了改善达到策略，更大，更多样化的样本 在美国的变性人。从历史上看，性和生殖健康（SRH）的研究已有 由于假定的推测 怀孕和相关结果只能由cisgender妇女经历。但是，TNBI人计划 为了怀孕，因此需要高质量和循证医疗保健。尽管需要 关于TNBI种群SRH需求的现有数据主要来自便利样本 - 尺寸很小 和/或地理范围有限。代表性数据的死亡意义重大表示SRH提供商 没有足够的证据来确保满足其TNBI患者的SRH需求 在现有的医疗保健服务中 - 在其中造成较低质量的护理和SRH差异的原因 人群。尽管关于跨性别者和非二进制人的数据很少 甚至稀缺。因此，本研究旨在测试改善研究参与，保留， 在美国TNBI人群中收集的数据的质量。具体目的包括：（1）招募 来自美国各地的TNBI人的大型潜水员样本，（2）收集有关核心SRH的纵向数据 结果，以及（3）提高TNBI参与者SRH研究参与者的保留率和数据质量。 标准方法。为了实现这些目标，我们将实施四臂平行设计，随机控制 在其在线调查中，将参与者随机接收零，一个或两个新颖的调查功能的试验： 包括性别的解剖器官清单，用于筛选调查逻辑和/或可自定义的调查 语言来个性化他们的调查经验。对照组将根据 一个由2部分的性别认同问题，以及标准医学术语的使用。该研究将解决挑战 在以前的SRH研究中遇到了TNBI人群，将有助于最佳证据 与其他历史上的其他人群一起收集数据的实践，这些人在历史上被认为是“难以到达的” 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范围 影响 - 包括对研究和临床护理资格的精致确定，改进的研究 参与，以及更好的TNBI人群的医疗保健筛查和治疗。超越SRH和前进 可以应用本研究中测试的这种新型调查方法的基于循证的人 广泛地推进公共卫生研究方法并提高数据的准确性和相关性 收集到潜水员种群和主题的范围。