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.

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Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet® Practices

This report, authored by the PCORnet Engagement Coordinating Center, examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.

This resource was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: INSIGHT

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the INSIGHT Clinical Research Network (CRN) and their Accelerator model of engagement. Through the Accelerator model, INSIGHT convenes topic-specific teams of patients and other stakeholders to rapidly provide guidance on INSIGHT’s policies, research questions, and general direction. Other organizations seeking to work with INSIGHT or establish patient and stakeholder accelerator programs can use this webinar as a resource.

INSIGHT is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: GPC

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the Greater Plains Collaborative Clinical Research Network (CRN) and their Rapid PACE online engagement community for investigators. Through Rapid PACE, investigators can present their projects to and solicit feedback from a panel of patients and stakeholders. Other organizations seeking to work with GPC or establish patient and stakeholder reactor panels can use this webinar as a resource.

GPC is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: PaTH

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the PaTH Clinical Research Network (CRN) and their Story Booth project. PaTH’s Story Booth project collects audio stories from patients and caregivers, helping to bring together patients who are interested in getting engaged with researchers who are looking to engage patients around specific topics. Other organizations seeking to work with PaTH or engage patients and stakeholders by collecting audio stories can use this webinar as a resource.

PaTH is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

Equity and Inclusion Guiding Engagement Principles

This document provides a set of guiding engagement principles for placing diversity, equity, and inclusion at the center of health research partnerships. Developed by PCORI’s Advisory Panel on Patient Engagement, the  four principles—Inclusion, Equitable Partnerships, Trust/Trustworthiness, and Accountability/Actionability—are offered to ensure that diversity, equity, and inclusion are an explicit goal of partnerships from the start. The principles are intended for any person or organization involved in the research community, including leaders and members of multi-stakeholder research teams, leaders and staff of health research organizations, health systems, patient and other stakeholder organizations,  and training institutions. The document includes self-assessment questions and practical suggestions for teams to incorporate into activities.

Copyright © 2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.  Equity and Inclusion Guiding Engagement Principles is made available under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0 International).  Click here for more information:  

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 tool to systematically assess the experiences, resources, and limitations of using technologies with refugee groups and to elicit details that contribute to culturally appropriate planning and implementation of refugee virtual group meetings. 

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 covers key components of digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Research Teams. 

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 digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Community Partners. 

Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) Patient-Centered Research Priority Report

This Patient-Centered Research Priority Report provides researchers a prioritized list of patient-centered research questions, leading to meaningful studies for end users. It contains research priorities and questions related to substance use and prenatal care informed by patient stakeholders during All-In Meetings. This report includes stakeholder identified research questions, a mind-map, along with notes generated during the meetings.

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 collective journey map, identify and prioritize patient-centered research questions, and create drafts of the Stakeholder Capacity Needs Report and Stakeholder Engagement Roadmap.

Virtual Community Engagement Studio Toolkit

The toolkit builds on the Community Engagement Studio (CES) model and toolkit developed by the Meharry-Vanderbilt Community Engaged Research Core. The Maternal Mental Health Research Collaborative tailored the model for researchers and community experts interested in maternal mental health and/or opioid use and recovery to provide focused guidance for engaging these populations in the virtual medium. This toolkit builds on the project team’s earlier toolkit, (available here). The toolkit provides a comprehensive step-by-step guide to implement the CES model with these populations in a virtual environment.

Value Proposition Playbook for Participant-Driven Research in Health Care

This resource is an action-oriented guide developed by and for patient and participant-driven research communities (PDRCs) to sustain their work by demonstrating value to their partners, including their participants and funders. The Playbook draws from the direct experience of PDRCs, as well as evidence and resources on partnership development and nonprofit sustainability, and includes strategies and tools for PDRCs to identify their strengths, understand areas for growth, identify priority audiences, and tailor their value propositions to different audiences. The Playbook was developed as part of the PCORI-funded Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth.

Strategies for Improving Patient Representativeness in Research Governance Report Issue Brief

This issue brief offers a snapshot of the full Strategies for Improving Patient Representativeness in Research Governance report, which provides examples of governance recruitment and retention practices sourced from literature scans and case study interviews from the PCORI-funded Participant-Driven Research Community Learning Network (PDRC LN) project. With a focus on engaging populations traditionally underrepresented in research in patient-driven research community governance, the brief provides exciting highlights from the report, which gives detailed descriptions of how PDRCs are doing this work and highlights lessons learned from their experiences. The brief concludes with a set of guiding principles with important implications for both funders and researchers. The PDRC LN project was supported by NORC at the University of Chicago (NORC) and AcademyHealth.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Digital Tools for Facilitating Patient/Partner Engagement

Part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices, this townhall-style webinar focuses on digital tools for facilitating patient partner engagement. Panelists Shilpa Venkatachalam (Associate Director, Patient-Centered Research, Global Healthy Living Foundation) and Dana Goodlett (Research Engagement Officer, University of Pennsylvania School of Medicine) discuss unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake (Senior Director, Strategic Partnerships, Evidation Health) moderates the session. This webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Building Stakeholder Capacity to Engage around Technical Content

Part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices, this townhall-style webinar focuses on building stakeholder capacity to engage around highly technical content. Panelists Monique Does (Research Project Manager, Kaiser Permanente Division of Research) and Liz Salmi (Senior Strategist of Research Dissemination, OpenNotes) discuss effective tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (Patient Partner, PaTH Network) moderates the session. This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Supporting Diverse & Inclusive Engagement

These slides were developed as part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices. This townhall-style webinar focused on supporting diverse inclusive engagement. Panelists Carolyn Shimmin (Public and Patient Engagement Lead, George and Fay Yee Centre for Healthcare Innovation) and Freddie White-Johnson (Program Director, Mississippi Network for Cancer Control and Prevention) discussed creating an inclusive environment for engagement, strategies for stakeholder retention, and the importance of community-centered approaches. Lisa Stewart (Senior Engagement Officer, PCORI) moderated the session. These slides can be used by researchers and organizations to inform policies and programs for increasing underrepresented population engagement in research and governance.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Scaling a Culture of Engagement in Research

Part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices, this townhall-style webinar focuses on scaling a culture of engagement in research. Panelists Al Richmond (Executive Director, Community-Campus Partnerships for Health) and Libby Hoy (Founder/CEO, PFCCpartners) discuss the role of leadership in promoting engagement, share topics on promoting support for engagement, and provide strategies to help leaders influence engagement. Rebekah Angove (Vice President, Patient Experience and Program Evaluation, Patient Advocate Foundation) moderates the session. Researchers and organizations seeking to grow or expand a culture of research engagement in their own institutions can use this webinar as a resource.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: PCORnet Engagement Workgroup

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the PCORnet Engagement Workgroup and their efforts to develop a set of Core Principles for the network. Engagement Workgroup leadership discuss the Core Principles identified by the group, the process followed for generating the principles, and next steps for implementation across PCORnet.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: STAR

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the STAR Clinical Research Network (CRN) and their Person Centeredness of Research Scale (PCoR Scale). STAR’s PCoR Scale is a seven-item scale that uses 5-point Likert ratings to assess the extent of person-centeredness of research products and can be used by researchers, funders, policymakers, and other stakeholders. Other organizations seeking to work with STAR-CRN or rate the person-centeredness of research could use this webinar as a resource.  
 
STAR is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: REACHnet

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the REACHnet Clinical Research Network (CRN) and their Research Ready training program. REACHnet’s Research Ready: Guide for Engaging Staff in Research Studies shares best practices for engaging clinic staff throughout the research process so clinicians can later implement study findings in clinical care settings. Other organizations seeking to work with REACHnet or engage clinicians in research can use this webinar as a resource.
 
REACHnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: PEDSnet

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the PEDSnet Clinical Research Network (CRN) and their Family and Youth Research Education program (FYREworks). FYREworks is a set of interactive and web-based trainings and toolkits designed to help youth, caregivers, and researchers form research partnerships and conduct patient-centered outcomes research. Other organizations seeking to work with PEDSnet or engage youth patients and their caregivers in research can use this webinar as a resource.
 
PEDSnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: OneFlorida

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the OneFlorida Clinical Research Network (CRN) and their Citizen Scientist program. Through the Citizen Scientist program, community members are engaged as meaningful collaborators throughout the research process and provide feedback on research questions, study design, research materials, and other items. Other organizations seeking to work with OneFlorida or establish a similar program can use this webinar as a resource.
 
OneFlorida is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: CAPriCORN

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the CAPriCORN Clinical Research Network (CRN) and their Patient/Clinician Advisory Committee (PCAC). The PCAC is comprised of patients and clinicians who advise CAPriCORN on data use, research priorities, and engagement processes. Other organizations seeking to work with CAPriCORN or establish a diverse stakeholder advisory committee can use this webinar as a resource.
 
CAPriCORN is a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: ADVANCE

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the ADVANCE Clinical Research Network (CRN) and their Patient Engagement Panel (PEP). Through the PEP, patients can advise ADVANCE on network-level issues and provide input to researchers on ongoing projects. Other organizations seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.
 
ADVANCE is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

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