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

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.