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 36 results
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…
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…
CAPriCORN Patient and Community Advisory Committee (PCAC) Consultation Abstract Form
The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) created this consultation abstract form for researchers to submit their study plans to the CAPriCORN Patient and Community…
OCHIN-ADVANCE Engagement Values, Functions, and Metrics
The Accelerating Data Value Across a National Community Health Center (ADVANCE) Clinical Research Network (CRN) outlined its priorities and metrics for engagement across patient and caregiver groups in this snapshot…
SUMMIT Engagement Survey
This survey, created by the SUMMIT study team, is used to gather feedback on what went well and what could be improved after each study team meeting. The document could…
360 Engagement Assessment
Research Action for Health Network (REACHnet) Clinical Research Network (CRN) developed the 360 Engagement Assessment to identify strengths and opportunities to improve bidirectional relationships between stakeholder groups and the study…
Stakeholder Engagement in Studies Toolkit
The Executive Antibiotics Stakeholder Advisory Group (EASAG) for the PCORnet ® Obesity Antibiotics Study (ABX) developed this collection of stakeholder engagement tools. The toolkit includes an engagement checklist, Memorandum of…
Research Committee Charter
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) describes the responsibilities and operations of their Research Committee Charter. Use this charter to learn more about the iConquerMS Research…
Engagement Committee Charter
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) describes the responsibilities and operations of their Engagement Committee Charter. Use this charter to learn more about the iConquerMS Engagement…
Research Committee Standard Operating Procedure
This Standard Operating Procedure (SOP) provides details on the operations of NephCure Kidney Network (NKN) Patient-Powered Research Network's (PPRN) Research Committee. This SOP explains the processes of the committee as…
Governing Board Charter
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) describes the responsibilities and operations of their Governing Board. Use this charter to learn more about the iConquerMS Governing Board…
Research Committee Code of Conduct
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) is their Research Committee Code of Conduct. Organizations can use this document to draft their own Code of Conduct for…
2018 Annual Report
NephCure Kidney Network (NKN) Patient-Powered Research Network's (PPRN) 2018 Annual Report summarizes the data provided by registry participants collected from March 2017 to March 2018. Researchers can use the data…
Minority Research Engagement Survey
This survey was developed by the iConquerMS Patient-Powered Research Network (PPRN) to investigate why people belonging to minority groups have lower participation in multiple sclerosis studies. Use this document to…
A Model for Sustainable, People-centered Engagement
The Health eHeart Alliance (The Alliance) Patient-Powered Research Network (PPRN) created this cause group model to create more opportunities for sustained patient engagement. In this guide, there are resources The…
Principles of Partnership Self-Assessment Tool
This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the…
PPRN Resources: Responses to Community Needs and Data Reporting
This resource developed by the DuchenneConnect Network (DCN) Patient-Powered Research Network (PPRN) describes the resources of The Duchenne Registry and Parent Project Muscular Dystrophy’s (PPMD) online platforms. The need for…
Patient and Clinician Advisory Committee (PCAC) Evaluation Interview Guides
This interview guide was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to hold 30-minute semi-structured (confidential) phone interviews with Patient and Clinical Advisory…
Patient and Clinician Advisory Committee (PCAC) Evaluation Plan
This evaluation plan by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) indicates the logic model and metrics used to evaluate their Patient and Clinician Advisory…
Patient and Clinical Advisory Committee (PCAC) Online Survey Form
This survey was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to evaluate the progress of the Patient and Clinical Advisory Committee (PCAC) and…
Engagement Assessment Project: Findings and Recommendations
This report, developed by the PCORnet ® Engagement Committee, supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for…
Patient Engagement in Cancer Research: Environmental Scan Report
The Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Research Center conducted an environmental scan to review existing methods, models, activities, best practices, and opportunities for patient…
Connecting Community to Research: A Toolkit
This document, created through the University of Kansas Center of Research, is a health research agenda created to specifically address the needs and perspectives of migratory and seasonal farmworkers. The…
COMET DCIS Stakeholder Advisory Board Baseline Survey
A survey developed by the Alliance for Clinical Trials in Oncology Foundation for collecting information from members of a stakeholder advisory board could be used as an example or template…
Focus Group Protocol Materials
This focus group guide was developed by Planetree for conducting focus groups with patient and family advisory councils and gauging their knowledge, awareness, and use of patient-centered outcomes research. This…
