Engagement Optimization Unit

参与度优化单元

• 批准号: 10492741
• 负责人: LOURDES A. BAEZCONDE-GARBANATI
• 金额: $ 100.52万
• 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/10492741
• 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; Hispanic; Hospitals; Informed Consent; Interviewer; Investigation; Knowledge; Language; Latino; Latino Population; 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; secondary outcome; study population; tool; treatment response; 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：敬业度优化单元 (EOU) 随着分子基因组学的进步，我们对肿瘤进化的驱动因素有了更深入的了解， 治疗反应，但这些研究中西班牙裔/拉丁裔 CRC 患者的纳入人数很少。而且， 实际上没有经验数据来指导教育、同意、注册和保留的最佳做法 H/L患者进行癌症基因组学研究，也不存在文化、语言、识字和算术能力 使用适当的工具来接触这些患者或促进他们收到的数据的解释。更好的 了解 H/L 如何理解、重视和交流基因组学相关信息至关重要 为优化患者参与和结果的严格研究奠定了基础。参与度优化 单位（EOU）将通过进行严格的研究来填补这些空白，以产生基于证据的最佳实践和 通过验证特定文化的工具来优化西班牙裔/拉丁裔患者的参与和赋权。这 将通过实验、评估、实施和再评估的迭代过程来完成 在 LAC+USC 和 Norris 进行的一项研究人群中，有 275 名患有转移性 CRC 的 H/L 参与者，以及一项单独的研究 由 500 名患有 CRC 的 H/L 参与者（包括新诊断的和幸存者）组成的队列，他们将从事基因组研究 排序和跟进。具体目标是： (1) 评估学生的教育和交流需求 与参与癌症基因组学研究相关的 H/L CRC 患者；并评估语言的作用， 文化适应、算术和健康素养； (2) 制定 H/L CRC 患者参与的最佳实践 基因组表征的知情同意书； (3) 确定最有效的策略 向 H/L CRC 患者传达基因组结果； (4) 开发和测试综合工具包（The 通过叙事赋权工具套件 (H/L G.E.N.E.) 进行西班牙裔/拉丁裔基因组参与）供以下人员使用 promotores de salud（社区卫生工作者）和其他以优化 H/L 为目的的提供者 参与、加强招募和加强 H/L 患者对癌症基因组学研究的保留。