Engagement Optimization Unit

参与度优化单元

• 批准号: 10696246
• 负责人: LOURDES A. BAEZCONDE-GARBANATI
• 金额: $ 36.11万
• 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 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10696246
• 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; Disparity; Education; Educational Assessment; 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; 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：参与优化单元（EOU） 随着分子基因组学的进步，我们对肿瘤演变的驱动因素有了更好的理解， 尽管这些研究中纳入的西班牙裔/拉丁裔CRC患者很少。此外，委员会认为， 实际上没有经验数据可以为教育、同意、注册和保留提供最佳做法 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 使用适当的工具来接触这些患者或促进对他们收到的数据的解释。更好的 了解H/L如何理解、评价和交流基因组学相关信息是至关重要的 为严格的研究奠定基础，以优化患者参与和结果。参与优化 EOU将通过开展严格的研究来填补这些空白，以产生基于证据的最佳做法， 通过验证文化特定的工具来优化西班牙裔/拉丁美洲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和Norris的275例H/L转移性CRC受试者的研究人群中， 一组500名H/L参与者患有CRC（包括新诊断的和幸存者），他们将参与基因组学研究。 排序和跟进。具体目标是：（1）评估教育和沟通需求， H/L CRC患者参与癌症基因组学研究的相关性;并评价语言的作用， 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 在基因组表征的知情同意中;（3）确定最有效的策略， 将基因组结果传达给H/L CRC患者;以及（4）开发和测试全面的工具包（The 通过叙事授权工具包（H/L G. E. N.E.）的西班牙裔/拉丁裔基因组参与使用的 promotores de salud（社区卫生工作者）和其他提供者，目的是优化H/L 参与，加强招募和加强保留H/L患者进入癌症基因组学研究。