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 176 - 200 of 415 results
OCHIN-ADVANCE Patient Engagement Panel Guide and Request Form
The Accelerating Data Value Across a National Community Health Center (ADVANCE) Clinical Research Network (CRN) developed a request form for researchers to engage with their Patient Engagement Panel (PEP). This…
OCHIN-ADVANCE Patient Engagement Panel Handbook
The Accelerating Data Value Across a National Community Health Center (ADVANCE) Clinical Research Network (CRN) Patient Engagement Panel (PEP) Guidebook was created to describe engagement policies, procedures, benefits, and practices…
IBD Partners' Top Citizen Scientist Award Toolkit
This toolkit by the IBD Partners Patient-Powered Research Network (PPRN) (formerly CCFA Partners) was used to create the Top Citizen Scientist Award Program. The goal of the program is to…
ImproveCareNow Newsletter (2018)
This eNewsletter by the ImproveCareNow (ICN) Patient-Powered Research Network (PPRN) can be used as an example when crafting messages to your stakeholders. ICN formerly was a Network Partner in PCORnet…
Health Literacy Presentation
This PowerPoint presentation from PARTNERS Patient-Powered Research Network (PPRN) is used to educate people on the importance of health literacy. It can be used by organizations to learn more about…
Principles for Patient Collaboration V1
This resource was created by the IBD Partners Patient-Powered Research Network (PPRN) (formerly CCFA Partners) Patient Governance Committee and intended to be given to investigators at the beginning of a…
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…
PRIDEnet and ArthritisPower: Community Engagement Using Digital Technologies
This presentation from PRIDEnet and ArthritisPower (formerly AR-PoWER) Patient-Powered Research Networks (PPRN) explores community engagement practices using online technologies. Use this guide to learn how to use multiple tools and…
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…
Engagement Assessment Project: Results of the Engagement Assessment Project
In 2018, the Genetic Alliance Coordinating Center set out to capture and describe the engagement practices and lessons learned across PCORnet®. This presentation may be useful to stakeholders who want…
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…
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…
