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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IBD Partners Newsletter (October 2016)

This newsletter by the IBD Partners Patient-Powered Research Network (PPRN) (formerly CCFA Partners) includes examples of what they've learned about IBD from completed partner surveys. Use this as a template…

Patient Governance Committee Application Example

This email invitation template was created by the IBD Partners Patient-Powered Research Network (PPRN) (formerly CCFA Partners) to invite patients enrolled in their registry to become members of their Patient…

OurSuccess Infographic Template

The goal of the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN) is to transform the health, care, and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (inflammatory…

Communications/Social Media Template

This template was created by the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN) to manage their communications and social media. Use this as a tool to track your social media platforms…

Diversity and Inclusion

This document, developed by the PCORnet ® Engagement Committee, is intended to provide guiding principles for diversity and inclusion in PCORnet. It can be used by researchers and organizations to…

2016 Patient Governance Council By-laws

This is a copy of IBD Partners Patient-Powered Research Network (PPRN) (formerly CCFA Partners) Patient Governance committee by-laws. Use it as an example to help draft your organization’s bylaws for…

Travel Toolkit

This toolkit was created by members of the Patient Advisory Council of the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN). The purpose of this toolkit is to share personal stories about…

Tri-Fold Brochure Sample

This brochure by the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN) can be used as an example when crafting your own outreach and communications materials for stakeholder groups. ICN formerly was…

Blog Post Sample

This blog by the ImproveCareNow(ICN) Patient-Powered Research Network (PPRN) can be used by patient networks as an example when crafting blog content for stakeholder groups. ICN formerly was a Network…

Engagement Key Driver Diagram

This document by the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN) describes the aims for a learning health system (LHS). Networks interested in evolving toward the LHS can use this as…

Clinician-Patient Role Play Scenarios

Juno Obedin-Maliver, MD, MPH, MAS, and Mitchell Lunn, MD, MAS, from PRIDEnet Patient-Powered Research Network (PPRN) developed scenario-based training materials intended to gather sexual orientation and gender identity from patients…

Participant Advisory Committee Bylaws

This document was created by PRIDEnet Patient-Powered Research Network (PPRN) and serves as an example of how a Participant Advisory Committee can be structured and operated. Use this document as…

Clinician Engagement

This presentation from Duke University describes steps to overcome barriers for successful engagement of clinicians throughout the research process. The concepts presented in the slides can be adopted by multiple…

The PRIDE Study Community Partner Consortium MOU

The University of California at San Francisco developed this Memorandum of Understanding (MOU) template to establish a partnership between PRIDEnet Patient-Powered Research Network (PPRN) and a collaborator that will provide…

Outreach Plan and Checklist Template

This outreach template was developed by the PCORnet ® Genetic Alliance Coordinating Center to guide the creation of an outreach plan. Use the guiding questions and checklist in this document…

Plain Language Principles Infographic

This infographic developed by the PCORnet ® Genetic Alliance Coordinating Center is focused on health literacy and using plain language in health research communications. Clinicians and researchers can use these…

Engagement Assessment Tool

This engagement assessment tool developed by the PCORNet ® Engagement Committee describes principles to consider throughout your shared research process. Organizations can use these principles to help nurture essential partnerships…

Terms Glossary

This document was developed by the PCORnet ® Engagement Committee and contains PCORnet-specific definitions. This document can help researchers discuss engagement in the clinical research space. The Engagement Committee was…

Elements for Effective Engagement

This document, developed by the PCORnet ® Engagement Committee, outlines key elements for stakeholder’s engagement in research. The elements included were identified through a review of the literature and gathering…

Clinical Engagement Value Proposition

This resource, developed by the PCORnet ® Engagement Committee, provides a clear proposition for the value of incorporating research into daily medical practice that had not previously been well described…

Writing Team Orientation Packet

The PARTNERS Patient-Powered Research Network (PPRN) Writing Team Orientation Packet provides team members an overview of their roles and responsibilities and the importance of their participation in health-literate communication. The…

TransFORWARD Webinar: The PRIDE Study

TransForward’s primary goal is to create a statewide Transgender-Powered Research Learning Collaborative Network to conduct research on transgender health issues across Texas. There are significant gaps in research to guide…

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