Engagement Tool and Resource Repository
PCORI is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. We do this to ensure that the results of the studies we fund are relevant, trustworthy, and more likely to be used in practice. PCORI also supports the uptake of engagement practices and methodologies within the broader healthcare research community. To encourage the spread of these practices, we have assembled a repository of engagement-related tools and resources developed and used by PCORI awardees. This searchable peer-to-peer repository includes resources that can inform future work in PCOR and was developed based on a process, which you can learn more about here.
Displaying 376 - 400 of 415 results
DREAMS Team Standardized Test and Answer Key
This resource is a quiz and answer key, testing knowledge of potential roles that research patient advocates can play in a research study. The quiz could be used to supplement…
Prototype for Future Workshops
Developed by the Reagan-Udall Foundation for the FDA, this document serves as a prototype for conducting future workshops. It contains an outline of what the project team identified as a…
Strategy Guide for Establishing Community Academic Partnerships
This guide developed by New York University provides a step-by-step blueprint for establishing community-academic partnerships. The overarching goals of the PCOR Strategy Guide are to help investigators: (1) effectively engage…
Tennessee Sickle Cell Disease Network Community Ambassador's Training Manual
This training manual was developed by Vanderbilt University for community ambassadors recruiting individuals and families affected by sickle cell to participate in the TN Sickle Cell Disease Network Project. The…
Curriculum Report
The Curriculum Report is a summary of the approach used by the project team at University of New Mexico to develop and support collaborative research teams. The general approach could…
Participatory Research in Behavioral Health Training
This resource is a slide deck providing training on participatory research in behavioral health developed by Yale University. The training curricula presented in the slides could be used by other…
English Post Forum Interview Questions
This interview guide was developed by the University of California to evaluate participant experience after participating in a forum. The guide could be used as an example or template for…
Patient Partner Research Presentation
This recorded presentation developed by Emory University discusses the value of patient-centered outcomes research in addressing the health concerns of patients and families. The video could serve as a training…
Patient Advisory Committee for Clinical Trials Training Packet
This report by the Aplastic Anemia & MDS International Foundation outlines their work to set up the Patient Advisory Committee for Clinical Trials (PACCT+). This report is intended to provide…
People-Driven Research Toolkit
This toolkit, created by PXE International, is intended to guide researchers to include all stakeholders in the process of developing and prioritizing research questions. The toolkit can be used by…
Successful Partnership Checklist
This resource created by the National Organization for Rare Disorders and the University of Maryland provides a checklist to evaluate successful partnerships. It can be used by a patient advocate…
Overview of the Patient-Centered Medical Home for Rural Patients, Caregivers and Healthcare Stakeholders
This overview of the patient-centered medical home was developed by the University of Kansas Center for Research, Inc. and specifically written for rural stakeholders. The document focuses particularly on the…
Spanish Post Forum Interview Questions
The University of California developed this interview guide (in Spanish) to evaluate participant experience after participating in a forum. The guide could be used as an example or template for…
Speak for Yourself Workshop Website 2017
The Speak for Yourself Workshop was held in 2017 by United Cerebral Palsy. The purpose of the workshop was to engage and educate patient advocates on patient-centered outcomes research and…
Curriculum for Teaching PCOR to Stakeholders and Patients
This slide deck was presented at Arizona State University's workshop, Take Action for Arizona's Children Through Care Coordination: Building the System, and provides an overview of a model for care…
Symposium on Enhancing Patient- and Family-Centered Care through Learning, Discovery, and Engagement Dissemination and Implementation Plan
This dissemination and implementation plan developed by Geisinger Clinic can serve as a template for researchers interested in disseminating work from symposiums.
HARA PCOR/CER Training Program
Presentation slides developed by the National Alopecia Areata Foundation provide training on the basics of patient-centered outcomes research, comparative effectiveness research, and the importance of research engagement. While initially aimed…
Knowledge Dissemination Report
This report on engagement efforts in the MS Minority Research Engagement Partnership Network outlines barriers and facilitators to engagement among the multiple sclerosis community. The report could inform the work…
Enhancing Community Health Center PCORI Engagement (EnCoRE) Live Session Library
This resource includes a library of presentation slides and recorded webinars focused on introducing concepts in patient-centered outcomes research, primarily focused on developing research studies and data analysis. The webinars…
Developing Leadership Skills for African-American Patients with Serious Mental Illness
This slide deck was developed by the Illinois Institute of Technology and outlines how they developed a training program for lived experience leaders participating in their project. The training focused…
Poster: Patients & Family Advisory Councils (PFACs): Recruiting and Supporting Members from Diverse and Vulnerable Communities
Presented by the Hospital Medicine Reengineering Network (HOMERuN) Research Collaborative, this poster describes strategies to recruit and support members from diverse and vulnerable communities on hospital-based Patient and Family Advisory…
Sustainability Manual for Research Coaches and Staff
This manual was developed by the Council for Jewish Elderly (CJE) SeniorLife specifically for operating the Bureau of Sages at CJE SeniorLife as an ongoing research advisory board of nursing…
Think Tank Times Newsletter May 2018
A publication of the Veterans' Action League, this newsletter is a platform for dialogue and engagement with other veterans and key stakeholders about what veterans need to make healthcare decisions…
Toolbox for Creating Sustainable Partnerships with Patients and Families in Research
Developed by the Institute for Patient and Family-Centered Care, this online toolbox consists of information, tools, resources, and examples from the field that aim to help build capacity to create…
70x2020 Colorectal Screening Initiative Strategic Plan
The 2015 Strategic Plan for the 70x2020 Colorectal Screening Initiative highlights partnership participants for the Initiative, which aims to see at least 70 percent of Mississippians up-to-date with recommended colorectal…
