Engagement Optimization Unit

参与度优化单元

• 批准号: 10294888
• 负责人: LOURDES A. BAEZCONDE-GARBANATI
• 金额: $ 94.42万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-22 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10294888
• 关键词: Acculturation; Address; Advisory Committees; Area; Attitude; Belief; Biological; California; Cancer Etiology; Cause of Death; Cessation of life; Client satisfaction; Colorectal Cancer; Communication; Communities; Community Health Aides; Conflict (Psychology); Consent; County; Cross-Sectional Studies; Data; Data Analyses; Education; Enrollment; Evaluation; Evolution; Exhibits; Feedback; Focus Groups; Fostering; Foundations; Genomics; Hispanics; Hospitals; Informed Consent; Interviewer; Investigation; Knowledge; Language; Latino; Los Angeles; Malignant Neoplasms; Medical center; Molecular; Newly Diagnosed; Oncologist; Participant; Patient Recruitments; Patient-Focused Outcomes; Patients; Population; Process; Provider; Quality of Care; Research; Research Personnel; Role; Surveys; Survival Rate; Survivors; Testing; United States; Woman; base; cancer genomics; clinical trial participant; cohort; colon cancer patients; colorectal cancer treatment; empowerment; evidence base; experimental study; follow-up; genetic counselor; health literacy; improved; literacy; low socioeconomic status; mathematical ability; meetings; men; metastatic colorectal; patient engagement; primary outcome; process optimization; psychological distress; randomized trial; recruit; response; secondary outcome; study population; tool; tumor; virtual

ABSTRACT: ENGAGEMENT OPTIMIZATION UNIT (EOU) With advances in molecular genomics, we have an improved understanding of the drivers of tumor evolution and therapy response, yet inclusion of Hispanic/Latino CRC patients in these studies has been minimal. Moreover, there are virtually no empirical data to inform best practices for educating, consenting, enrolling and retaining H/L patients in cancer genomics investigations, nor are there culturally, language, literacy and numeracy appropriate tools to utilize to reach these patients or to facilitate interpretation of data they receive. A better understanding of how H/Ls understand, value and communicate genomics-related information is the essential foundation for rigorous research to optimize patient engagement and outcomes. The Engagement Optimization Unit (EOU) will fill these gaps by conducting rigorous research to generate evidence-based best practices and by validating culturally specific tools for optimizing Hispanic/Latino patient engagement and empowerment. This will be accomplished via an iterative process of experimentation, evaluation, implementation and re-evaluation in a study population at LAC+USC and Norris of 275 H/L participants with metastatic CRC, as well as a separate cohort of 500 H/L participants with CRC (both newly diagnosed and survivors) who will be engaged in genomic sequencing and follow up. The Specific Aims are: (1) to assess the educational and communication needs of H/L CRC patients related to participation in cancer genomics research; and evaluate the role of language, acculturation, numeracy and health literacy; (2) to develop best practices for engagement of H/L CRC patients in informed consent for genomic characterization; (3) to determine the most efficacious strategies to communicate genomic results to H/L CRC patients; and (4) to develop and test a comprehensive tool kit (The Hispanic/Latino Genomic Engagement through Narrative Empowerment Tool Kit (H/L G.E.N.E.)) for use by promotores de salud (community health workers) and other providers with the purpose of optimizing H/L engagement, enhancing recruitment and strengthening retention of H/L patients into cancer genomics research.

摘要：参与优化单元（EOU） 随着分子基因组学的进步，我们对肿瘤进化的驱动因素和 治疗反应，但在这些研究中纳入西班牙裔/拉丁裔CRC患者的治疗方法很少。而且， 几乎没有经验数据可以为教育，同意，注册和保留的最佳实践提供信息 癌症基因组学研究中的H/L患者也没有文化，语言，识字和算术 适当的工具来吸引这些患者或促进他们收到的数据的解释。更好 了解H/LS如何理解，价值和传达与基因组相关的信息是必不可少的 严格研究的基础，以优化患者参与和结果。参与优化 单位（EOU）将通过进行严格的研究来产生基于证据的最佳实践，并 通过验证具有特定文化的工具来优化西班牙裔/拉丁裔患者的参与和授权。这 将通过实验，评估，实施和重新评估的迭代过程来完成 在LAC+USC的研究人群中，有275 h/L的诺里斯（Norris）具有转移性CRC的参与者，以及单独的 将参与基因组的500 h/l参与者与CRC（均被新诊断和幸存者）组成 测序和跟进。具体目的是：（1）评估 与参与癌症基因组学研究有关的H/L CRC患者；并评估语言的作用， 适应，算术和健康素养； （2）开发H/L CRC患者参与的最佳实践 在知情同意下，基因组表征； （3）确定最有效的策略 将基因组结果传达给H/L CRC患者； （4）开发和测试一个综合工具套件（ 通过叙事授权工具套件（H/L G.E.N.E.）的西班牙裔/拉丁裔基因组参与度） 促进Salud（社区卫生工作者）和其他提供商，目的是优化H/L 参与，增强招募并加强H/L患者保留到癌症基因组学研究中。