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.
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.
The University of Washington Type B Aortic Dissection (TBAD) Collaborative has drafted a governance document for team management.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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.