Project Summary
Background: Patient-centered outcomes research (PCOR) leads to better research processes and outcomes. Lack of institutional infrastructure for PCOR leads to missed opportunities and inefficiencies. NIH-funded Clinical and Translational Sciences Institutes (CTSI) are well placed to help advance PCOR.
Proposed Solution to the Problem: To address stakeholder challenges facing PCOR teams effectively, efficiently, and sustainably, institutions have to go beyond providing consultations and materials to establishing infrastructures to support stakeholder engagement. The project team will study how to create an institutional infrastructure to support PCOR researchers and stakeholders at the University of California, San Francisco, which has robust PCORI funding and a strong CTSI community engagement program.
Objectives: The objective is to create academic institutional infrastructures that support and promote PCOR with maximal efficiency and impact. The aims are to: assess the needs of PCOR investigators and map the capacity of CTSI and other infrastructures with respect to stakeholder engagement in all phases of PCOR; create a systematic stakeholder infrastructure to assist funded PCOR projects, develop new PCOR projects, and train new PCOR investigators; and use the systematic stakeholder infrastructure to develop new PCOR projects and assist UCSF PCORI-funded investigators in the implementation of their research and dissemination of their findings to local communities and clinical systems as well as through the national networks established by CTSIs and PCORI.
Activities: The project team will convene an institutional advisory board and conduct needs assessment and asset mapping. The researchers will develop an online platform and materials and meetings to train, connect, and provide technical assistance to the PCORI teams. The team will use these infrastructures to ensure that PCORI investigators carry out their project implementation and dissemination with the appropriate stakeholder input.
Outcomes and Outputs:
- Needs assessment findings and capacity mapping for PCOR at UCSF
- Infrastructure, including institutional advisory board, instruments, training materials, and online platform
- New PCOR investigators, PCOR collaborations, and stakeholders from communities of color and the underserved on current projects lacking sufficient diversity
Patient and Stakeholder Engagement Plan: Patients and community stakeholders from PCORI projects and from community health coalitions will participate in the advisory board meetings and convenings. They will meet every two months and participate in all project activities. They will help to create connections and disseminate results.
Project Collaborators: UCSF CTSI, UCSF Center for Community Engagement, health equity coalitions in San Francisco, University of New Mexico.
COVID-19-Related Project
Summary
This enhancement addresses the need for rapid stakeholder input for research during the COVID-19 pandemic. The overall goal is to ensure that clinical and translational research at the University of California, San Francisco will be patient-centered and community-engaged with a health equity focus during the pandemic.
The effort includes creating and maintaining a stakeholder body called the COVID Patient and Community Advisory Board, providing board review and feedback to clinical and translational research directly related to COVID-19 at the university, and providing board review and feedback to non-COVID-19 research projects at the university to adapt recruitment, data collection, retention, implementation, and dissemination strategies to the realities of the pandemic.
Enhancement Award Amount: $149,238