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 assembled this 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 1 - 25 of 415 results
Best Practices User Guide for Patient-Centered Outcomes Research Teams Engaging Online
Strict, lifelong infection-control policies restrict in-person contact to avoid the spread of bacteria between people with cystic fibrosis (CF). Based on the experience and knowledge of people with CF, this…
2020 PFA Summit on Measure Development: Bringing Patients and Families to the Table
This meeting summary report explores the importance of and opportunities to improve patient and family engagement in measure development to impact health care.
Five-Year Research Agenda on Black Maternal & Child Health
This agenda is the result of a community-centered approach to convene stakeholders across Kansas to develop solutions and improve Black maternal and infant health in the state through training, research…
Patient-Centered Outcomes Research Training Manual: Helping Researchers Initiate and Maintain Patient-Engaged Research Teams
This training manual provides discrete steps, tools and resources that Cystic Foundation (CF) Center research teams can utilize to integrate and maintain patient/caregiver-partners in CF research.
Patient & Family Engagement: Improving Health and Advancing Equity
This report synthesizes findings from patient-centered outcomes research (PCOR) and distills important lessons on how to effectively engage patients and families in ways that build relationships, improve outcomes and advance…
Guide for Researchers on Engaging Underserved Urban Communities in Research: Addressing Challenges in the Context of COVID-19
This guide provides insights from community members and community organizations and offers strategies to researchers for meaningful engagement.
Guide for Community Organizations on Engaging Underserved Urban Communities in Research: Addressing Challenges in the Context of COVID-19
This guide provides insights from community members and community organizations and offers strategies to effectively connect (specifically, during COVID-19 or other public health crises) and partner with researchers on topics…
Research Engagement Guide
This guide outlines patient- and community-centered processes and guidelines to ensure engagement in research and actionable systems change.
A Workbook to Support Community- Engaged Autism Research
This workbook represents an effort to promote collaborative autism research sharing collective experiences with Project STEER (Stakeholders Engaged in Early Intervention Research) including input directly from stakeholders and lessons learned…
Body Mapping Participant Workbook
Body mapping is a biographical tool that leverages creativity to construct personal narratives and visually communicate ideas, experiences, meanings and feelings. The Henry Ford Health System Patient Engaged Research Center…
Project STEER Research Agenda
Project STEER (Stakeholders Engaged in Early Intervention Research) is a collaboration borne out of the efforts of researchers, people with autism, parents and clinicians who have worked together to conduct…
Parkinson's Foundation Patient Advisory Boards Handbook
A guide developed by the Parkinson’s Foundation to provide interested stakeholders with the tools, resources, templates and examples to run a Parkinson’s patient advisory board (ad board).
Parkinson’s Foundation PARTner Dissemination Plan
The Parkinson’s Foundation Parkinson’s Advisors in Research and Training (PARTner) pilot project was created to address the lack of comparative effectiveness research in Parkinson’s disease and the need to begin…
A Guide for Hosting Bilingual Online Engagement for Communities Experiencing Hearing Loss
The purpose of this document is to provide tips that can help to optimize effective communication during virtual meetings for bilingual audiences who may also have hearing loss. Today's virtual…
READI Facilitator Training Package
The purpose of this training package is to give you tools and support to deliver the READI curriculum to your group. READI is designed as an introduction to health research…
Virtual Community Engagement Studio Toolkit for Researchers and Community Experts Interested in Maternal Behavioral Health and Intellectual and Developmental Disabilities
The toolkit builds on the Community Engagement Studio model and toolkit developed by the Meharry-Vanderbilt Community Engaged Research Core. The toolkit provides guidance, tools, and resources for engaging diverse community…
PCOR Case Study in Cystic Fibrosis
This case study describes how the cystic fibrosis community successfully built patient-centered outcomes research (PCOR) capacity. It is meant to serve as an illustration for other communities to build PCOR…
The Online Engagement Guide
This guide describes platforms that patient-centered outcomes research teams can use to create an in-person feel when patients, stakeholders, and research partners meet solely online.
Patient-Centered Outcomes Research Training Manual
This training manual provides discrete steps, tools, and resources that patient-centered outcomes research-focused teams can employ to successfully integrate and maintain patient, caregiver, and community partners in research.
Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in CER
The project Leadership Team developed a website to share what was learned during this project to begin to reconcile past harms and change the way research is conducted with persons…
GRID Toolkit
This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.
Patient Driven Research Community Research Activities
This brief contains important lessons learned from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth…
Toolkit for Digital Health Equity
This toolkit was developed by Massachusetts General Hospital for community partners, researchers, clinicians, and other stakeholders who aim to understand and eliminate barriers to virtual engagement and access to mental…
Partnering for Research
A website created by the University of Vermont & State Agricultural College in partnership with the Multiple Chronic Conditions (MCC) Community to share lessons learned and wisdom gained form partnering…
Amplifying Peer Priorities in Mood Disorders Research
This document contains a description of peer priorities for mood disorders research compiled from (1) a review of survey data previously collected by DBSA and (2) a multi-stakeholder convening. The…
