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 123 results
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 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…
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.
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…
Virtual Community Engagement Tip Sheets
The Maternal Mental Health Research Collaborative generated 11 community engagement memos/tip sheets on how to engage mothers in research through codesign teams. The memo topics were derived from Community Engagement…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
