Core-007

核心007

• 批准号: 10198076
• 负责人: David H Ellison
• 金额: $ 36.75万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-02 至 2022-08-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10198076
• 关键词: Caregivers; Clinical Research; Collaborations; Communities; Data; Databases; Goals; Health; Infrastructure; Methodology; Oregon; Patient Preferences; Patients; Phase; Population Heterogeneity; Research; Research Institute; Research Personnel; Resource Sharing; Resources; Testing; Time; Translational Research; Trust; Universities; Voice; Wisconsin; base; community engagement; design; experience; improved; individual patient; innovation; patient oriented; patient population; recruit; repository; research study

Engaging and understanding the perspectives of community stakeholders, including patients and their caregivers, is a critical component of all phases of clinical and translational research. Community engagement can facilitate efforts to identify health needs and priorities, provide critical input and data, and improve recruitment and retention for clinical research studies. The overarching goal of the proposed Optional Function, which we are calling the Health Experiences Research Initiative (HERI), is to augment current community engagement efforts by amplifying patient and caregiver voices in clinical and translational research using a time-tested, research-based approach for conducting and disseminating health experiences research. We will collaborate with the OCTRI Community and Collaboration Core, the Health Experiences Research Network (HERN-USA), the University of Wisconsin CTSA, and community partners to leverage and adapt the Database of Individual Patient Experiences (DIPEx) methodology, developed in 2001 by researchers at Oxford University as a way to provide trusted information on health experiences “from patients, for patients.” Our approach is innovative in that we will build on a proven methodology and leverage community and cross-CTSA collaborations to produce additional HERN modules (disseminated via healthexperiencesusa.org) and to create a repository of health experiences research as a shared CTSA resource to inform clinical and translational research. Specific aims include: 1) Amplify patient and caregiver voices in clinical and translational research using a time-tested, research-based approach to improve understanding of patient experiences, illuminate patient preferences, and contribute to the design and conduct of patient-centered research; 2) Develop, evaluate and improve mechanisms for disseminating health experiences research for use by CTSA researchers and stakeholders; 3) Build infrastructure and capacity for expanding and sustaining a US Health Experiences Research Network (HERN-USA) that can be leveraged as an innovative shared resource to more effectively integrate the voices of a diverse populations of patients and caregivers into all phases of clinical and translational research.

参与和理解社区利益相关者的观点，包括患者及其 护理人员是临床和翻译研究各个阶段的关键组成部分。社区参与 可以促进确定健康需求和优先事项，提供关键意见和数据并改善的努力 用于临床研究的招聘和保留。提出的可选功能的总体目标， 我们称之为健康经验研究计划（HERI）是为了增加当前社区 通过使用A扩增患者和照顾者的声音来进行临床和翻译研究的参与工作 经过时间测试的基于研究的方法，用于进行和传播健康经验研究。 我们将与OCTRI社区和协作核心合作，健康经验研究 网络（HERN-USA），威斯康星大学CTSA和社区合作伙伴利用和适应 牛津研究人员于2001年开发的个人患者经验数据库（DIPEX）方法学 大学是一种提供有关“患者，患者”的可信赖信息的方式。我们的 方法是创新的，因为我们将建立在经过验证的方法论上，并利用社区和交叉CTSA 合作生产其他HERN模块（通过healthexperiencesusa.org传播）和 创建健康体验研究的存储库作为共享的CTSA资源，以告知临床和 翻译研究。具体目的包括：1）在临床和 转化研究使用基于时间测试的基于研究的方法来提高对患者的理解 经验，照亮患者的偏好，并有助于以患者为中心的设计和行为 研究; 2）开发，评估和改善传播健康经验研究的机制 CTSA研究人员和利益相关者的使用； 3）建立基础设施和扩展和维持的能力 美国健康体验研究网络（HERN-USA），可以作为创新性共享的利用 资源以更有效地将患者和护理人员的潜水者人群的声音整合到所有人中 临床和翻译研究的阶段。