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 86 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…
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 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…
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…
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…
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…
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…
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 literature…
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…
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…
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…
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…
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…
Digital Strategies for Returning Value to Research Participants Issue Brief
This issue brief offers a snapshot of the full Digital Strategies for Returning Value to Research Participants report (available here), which examines principles for returning value to research participants and…
Digital Strategies for Returning Value to Research Participants Report
This report examines principles for returning value to research participants and provides examples of digitally based engagement strategies sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven…
Strategies for Improving Patient Representativeness in Research Governance Report
This report examines the significance of and strategies for improving patient representativeness in research governance and provides examples of governance recruitment and retention practices sourced from literature scans and case…
Training and Engaging Patients in Research Data Analysis Presentation
This presentation describes the engagement strategies used by the ACTIVATE study team to train their patient partners in data analysis. It includes useful information and resources that could be used…
