PO.PS01.11 · 人群科学

评估一种以社区为中心的方法,以提高研究不足人群在临床研究中的代表性

Evaluating a community-focused approach to increase representation of understudied populations in clinical studies

编号 7576 展板 24 时间 4/22 09:00–12:00 区域 Section 34 主讲 Kimlin Ashing, PhD
分会场 Psychosocial and Behavioral Epidemiology, Health Services Research, Implementation Science, Pharmacoepidemiology, and Other Topics
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作者与单位 Authors & Affiliations

Kimlin Ashing1, Virginia Savage1, Diana Tam1, Gaole Song1, Brenda Gascon1, Alyssa Cardenas2, Sophia Yeung1

1City of Hope National Medical Center, Duarte, CA,2TGen, Phoenix, AZ

摘要 Abstract

中文摘要
背景:我们的社区科学倡导者(CSA)项目旨在通过培养卫生领导者在其社区中推动临床研究参与,来应对族裔少数群体在以癌症为重点的临床试验中严重代表性不足的问题。我们开发并实施了一套基于循证的培训课程,包含六个模块,分别讨论临床研究的作用和益处、研究伦理、参与障碍、健康的社会驱动因素、癌症护理以及研究参与促进策略。 方法:CSA是通过社区卫生服务机构或倡导组织招募的社区卫生领导者和教育者。我们通过Zoom和Teams向服务于加利福尼亚州多元化社区的六个CSA队列讲授各模块。我们鼓励CSA开展社区科学和临床研究宣传,并记录其活动。我们通过分析前后调查中收集的12个项目,评估CSA推动临床研究参与的准备程度。我们通过分析活动追踪表和调查,评估参与者社区外展活动的范围和覆盖面,以及研究参与的障碍。 结果:共有103名参与者(83%为女性,14%为男性)完成了项目前后调查(n=103)。参与者代表多元化社区,其中50%自我认同为拉丁裔,37%为亚裔,12%为非裔美国人/黑人,2%为太平洋岛民。参与者准备程度的平均得分从基线时的24.7提高至干预后的31.3。通过追踪表报告了72项社区外展活动,估计服务了1662名以上的社区成员。活动包括40项非正式健康研究教育和32项正式健康研究教育活动,如社区演讲、健康博览会等。参与者指出,临床研究参与的持续障碍包括对研究或卫生系统可信度的担忧、对隐私或数据使用的担忧、语言障碍、缺乏为社区量身定制的信息、成本障碍、缺乏医生转诊,以及尴尬/文化耻辱感。 结论:CSA项目通过倡导能力建设,为提高临床研究的代表性提供了一种富有成效的方法。还需要进一步努力,继续在临床研究人员与代表性不足社区之间建立信任,在多部门利益相关者之间发展紧密的合作伙伴关系,并解决研究参与的结构性障碍。
查看英文原文 English abstract
Background: Our Community Scientist Advocate (CSA) program aimed to address the critical underrepresentation of ethnic minority populations in cancer-focused clinical trials by preparing health leaders to promote clinical research engagement in their communities. We developed and implemented an evidence-based training curriculum with six modules that discussed the role and benefit of clinical studies, research ethics, barriers to participation, social drivers of health, cancer care, and research engagement promotion strategies. Methods: CSAs are community health leaders and educators recruited via community health services or advocacy organizations. We delivered modules through Zoom and Teams with six CSA cohorts serving diverse communities in California. CSAs were encouraged to conduct community science and clinical study dissemination and log their activities. We assessed CSA preparedness to promote clinical research engagement through analysis of 12 items gathered in pre- and post-surveys. We evaluated the scope and reach of participants' community outreach activities, as well as barriers to study participation, through analysis of activity tracking forms and surveys. Results: A total of 103 participants, 83% female and 14% male, completed pre- and post-program surveys (n=103). Participants represented diverse communities, with 50% self-identifying as Latinx, 37% as Asian, 12% as African American/Black, and 2% as Pacific Islander. The mean score of participant preparedness increased from 24.7 at baseline to 31.3 post-intervention. 72 community outreach activities were reported through tracking forms and were estimated to serve more than 1662 community members. Activities consisted of 40 informal health research education and 32 formal health research education events such as community presentations, health fairs, etc. Participants noted that ongoing barriers to clinical study participation include concerns about research or health system trustworthiness; concerns about privacy or data use; language barriers; lack of information tailored to communities, cost barriers, lack of doctor referral, and embarrassment/cultural stigma. Conclusions: The CSA program offered an impactful approach to increase representation in clinical research through advocacy development. Further efforts are needed to continue building trust between clinical researchers and underrepresented communities, develop close partnerships between multisectoral stakeholders, and address structural barriers to research participation.
利益披露 Disclosure
K. Ashing, None.. V. Savage, None.. D. Tam, None.. G. Song, None.. B. Gascon, None.. A. Cardenas, None.. S. Yeung, None.

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