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 1 - 25 of 145 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…
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.
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…
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).
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…
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.
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…
White Paper: ACHIEVING DIGITAL EQUITY: HOW DO WE ENSURE ACCESS, RESOURCES, AND SUPPORT?
This white paper addresses the foundational need for addressing digital literacy and providing training and support for key groups like older adults in digital access. The paper covers strategies and…
Type B Aortic Dissection (TBAD) Collaborative Governance Document
The University of Washington Type B Aortic Dissection (TBAD) Collaborative has drafted a governance document for team management.
Community Readiness for Virtual Health Engagement
This document describes the assessment of community readiness for virtual engagement. The group developed a Checklist of Community Readiness for Virtual Health Engagement. This checklist can be used as a…
Guide for Community Partners: How to Use a Tablet to Connect to the Internet
This guide, created by Johns Hopkins University School of Nursing, assists community partners in using a tablet to connect to the internet, handle email, and join video calls. This guide…
Guide for Researchers: How to Assist Community Partners to Use Digital Technology
This guide, created by Johns Hopkins University School of Nursing, is for research teams aiming to build the digital technology capacity of community partners. This guide covers key components of…
Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) All-In Meeting Summary
This meeting summary, created by Cincinnati Children's Hospital Medical Center, provides an overview of the methods and results from their four All-In meetings. All stakeholders came together to develop a…
African Immigrant Health Research Consortium Partnership Agreement
The purpose of this partnership agreement is to establish the African Immigrant Health Research Consortium. The goal of this project is to bring partners together to foster research collaborations and…
Patient Partner Position Description by REACHnet
In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient- partner consultant. This resource can be used by…
Patient Engagement Officer Description by the Greater Plains Collaborative
In this document, the Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Engagement Officer (PEO). This resource can be used by researchers and other…
