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

项目总结 视频会议和安全门户等远程技术的出现使之发生了革命性的变化 收集健康数据和获取医疗保健的方法。例如，这些技术可以是 部署在完全远程和混合的临床试验方法中，有助于促进更多的参与 在代表性不足的群体之间以及通过弥合地理距离和减轻参与者负担 (例如，减少旅行时间，提高灵活性和保密性)。远程或在线方法也可以增加 获得关键服务(例如，心理健康咨询、性传播检测[性传播感染]预防) 稀有或地理上分散的。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，特别是针对任职人数不足的人 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)、美国印第安人(AI)等群体 西班牙裔/拉丁裔人群在临床试验中往往代表性不足，以至于他们经常 在研究研究中，将种族/民族归类为“其他”。值得注意的是，他们的代表性不足不仅 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切，这反过来又 削弱技术的相关性和有效性，并在这些技术之间开展分配活动。 性少数群体和性别少数群体(SGM)，如男同性恋、女同性恋、双性恋和变性人也是 在临床试验中通常不进行战略性抽样，甚至在临床上也没有衡量SGM的特性 审判。但在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(如艾滋病毒、性传播疾病、心理健康问题)相比，从而使许多新的健康 与这些人群相关的技术(疫苗、抗生素、激素疗法)不成比例。SGM 相对于普通人群，人们可能会经历更多的社会孤立，这可能是 在医疗保健和研究领域，医疗不信任和污名化的经历进一步加剧了这种情况。 为了解决这些问题，当前的提案寻求利用团队现有的社区 上述群体在美国4个不同地区的州的联系：(1)(A)共同- 创建和维护4个虚拟和混合咨询小组，以解决健康问题，并(B)编写材料 开展远程咨询小组；(2)共同制定和管理一项国家需求评估调查，以 参考的4组(N=800)涉及家庭自检技术的使用(最多3种类型)和 用于医疗研究和医疗保健提供的远程数据收集；以及(3)试点社区驱动的 向潜在参与者介绍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。

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.