Elevating Community Voices by Developing a User-centered Approach to Enable Self-testing and Remote Data Collection among Under-represented Populations (Project Elevate)

通过开发以用户为中心的方法来提高社区的声音，以在代表性不足的人群中进行自我测试和远程数据收集（Project Elevate）

• 批准号: 10820757
• 负责人: Eugenia Flores Millender
• 金额: $ 50万
• 依托单位: FLORIDA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-06-01 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10820757
• 关键词: Elevating; Community; Voices; Developing; User

PROJECT SUMMARY The advent of remote technologies such as video conferencing and secure web-portals have revolutionized approaches to health data collection and access to healthcare. For example, these technologies can be deployed in fully remote and hybrid approaches for clinical trials which could help promoting more participation among under-represented groups as well as by bridging geographic distance and reducing participant burden (e.g., less travel time, more flexibility and confidentiality). Remote or online approaches can also increase access to critical services (e.g., mental health counseling, sexually transmitted testing [STI] prevention) that are scarce or geographically dispersed. However, these approaches have yet to be optimized for all possible beneficiaries of technological advances in clinical trials and healthcare, especially targeting under-represented populations that are disproportionately experiencing social and geographic isolation. Groups like Asian American and Pacific Islander (AAPI – including Native Hawaiian), American Indian (AI) and Hispanic/Latino populations are often under-represented in clinical trials, so much so that they often occupy the racial/ethnic category of “other” in research studies. Notably, their under-representation not only leads to this literal “othering,” but also prevents scientists from identifying their unique concerns which in turn diminishing the relevance and effectiveness of technologies and distribution campaigns among them. Sexual and gender minorities (SGM) such as gay, lesbian, bisexual, and transgender populations are also often not strategically sampled for clinical trials, and SGM identities are often not even measured in clinical trials. But many health concerns addressed in clinical trials are over-represented in SGM populations compared to general populations (e.g., HIV, STIs, mental health concerns), thus, making many novel health technologies (vaccines, antibiotics, hormonal therapies) disproportionately relevant to these populations. SGM populations may experience social isolation at increased rates relative to the general population, which can be further exacerbated by medical mistrust and stigmatizing experiences in healthcare and research contexts. To address these concerns, the current proposal seeks to leverage the team’s existing community connections in states across 4 different regions of the U.S. among the aforementioned groups to: (1) (a) co- create and maintain 4 virtual and hybrid advisory groups to address health issues and (b) develop materials for the conduct of remote advisory groups; (2) co-develop and administer a national needs assessment survey for the referenced 4 groups (N = 800) addressing the use of home self-testing technology (up to 3 types) and remote data collection for healthcare research and healthcare provision; and (3) pilot a community driven approach to introducing home self-testing technology and remote data collection to potential participants from these groups to assess feasibility and acceptability.

项目概要 视频会议和安全门户网站等远程技术的出现彻底改变了 例如，这些技术可以是健康数据收集和获取医疗保健的方法。 以完全远程和混合的方式部署临床试验，这有助于促进更多参与 在代表性不足的群体中，以及通过缩小地理距离和减轻参与者负担 （例如，更少的旅行时间、更大的灵活性和保密性）也可以增加远程或在线方法。 获得关键服务（例如心理健康咨询、性传播检测 [STI] 预防） 然而，这些方法尚未针对所有可能的情况进行优化。 临床试验和医疗保健技术进步的受益者，特别是针对代表性不足的人群 不成比例地经历社会和地理孤立的人口。 亚裔美国人和太平洋岛民 (AAPI – 包括夏威夷原住民)、美洲印第安人 (AI) 等群体 西班牙裔/拉丁裔人群在临床试验中的代表性往往不足，以至于他们经常 在研究中占据“其他”的种族/民族类别 值得注意的是，他们的代表性不足。 导致了这种字面上的“他者”，但也阻止了科学家识别他们独特的关注点，这反过来又 降低了技术及其分发活动的相关性和有效性。 性别少数群体 (SGM)，例如男同性恋、女同性恋、双性恋和跨性别人群也属于 通常不会在临床试验中进行策略性抽样，并且 SGM 身份通常甚至不会在临床中进行测量 但临床试验中解决的许多健康问题在 SGM 人群中的比例过高。 与一般人群相比（例如艾滋病毒、性传播感染、心理健康问题），因此，使许多新的健康 技术（疫苗、抗生素、激素疗法）与这些人群尤其相关。 相对于一般人群，人群经历社会孤立的几率可能会更高，这可能是 医疗不信任以及医疗保健和研究领域的污名化经历进一步加剧了这种情况。 为了解决这些问题，当前的提案旨在利用团队现有的社区 上述群体在美国 4 个不同地区各州的联系：(1) (a) 创建和维持 4 个虚拟和混合咨询小组来解决健康问题，并 (b) 开发材料 开展远程咨询小组；(2) 共同制定和管理国家需求评估调查 参考的 4 个组 (N = 800) 涉及家庭自测技术的使用（最多 3 种类型）以及 用于医疗保健研究和医疗保健提供的远程数据收集；以及（3）试点社区驱动 引入家庭自检技术和远程数据收集的方法 这些小组评估可行性和可接受性。