Core-007

参与和理解社区利益相关者的观点，包括患者和他们的 护理者，是临床和转化性研究所有阶段的关键组成部分。社区参与 可促进确定卫生需求和优先事项的努力，提供关键的投入和数据，并改进 临床研究研究的招募和保留。拟议的可选功能的首要目标是， 我们称之为健康体验研究倡议(HERI)，是为了增强现有的社区 在临床和转化性研究中通过使用 开展和传播健康经验研究的经得起时间考验的、基于研究的方法。 我们将与OCTRI社区和协作核心、健康体验研究合作 网络(Hern-USA)、威斯康星大学CTSA和社区合作伙伴，以利用和适应 个人患者经验数据库(DIPEx)方法，由牛津大学的研究人员于2001年开发 大学作为一种方式，提供“来自病人，为病人”的值得信赖的健康体验信息。我们的 方法是创新的，因为我们将建立在经过验证的方法基础上，并利用社区和跨CTSA 合作制作更多的HERN模块(通过Health Experiencesusa.org传播)并 创建健康经验研究存储库，作为共享的CTSA资源，为临床和 翻译研究。具体目标包括：1)扩大患者和护理人员在临床和 使用久经考验的基于研究的方法进行转化性研究，以提高对患者的理解 体验，阐明患者偏好，并有助于设计和实施以患者为中心的 研究；2)制定、评价和完善传播卫生经验研究的机制 由CTSA研究人员和利益攸关方使用；3)建立基础设施和能力，以扩大和维持 可作为创新共享的美国健康体验研究网络(Hern-USA) 资源以更有效地将不同人群的患者和护理人员的声音整合到所有 临床和转化性研究的阶段。

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.