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 51 - 75 of 119 results
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…
ABX Demo Governance Plan
The PCORnet ® Obesity Antibiotics Study (ABX) created this governance plan to detail the governance structure used in the study. Other researchers can use this as an example to create…
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…
Engagement Committee Code of Conduct
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) is their Engagement Committee Code of Conduct. Organizations can use this document to draft their own Code of Conduct for…
Governing Board Code of Conduct
This resource developed by the iConquerMS Patient-Powered Research Network (PPRN) is the Code of Conduct for members of their governing board. The document details rules, expectations and behaviors expected of…
Community Advisory Council Summary
This resource is a summary of the Interactive Autism Network (IAN) Patient-Powered Research Network’s (PPRN) Community Advisory Council. Other organizations can use this to inform the structure of their own…
Community Advisory Council Charter
This charter was developed by the Interactive Autism Network (IAN) Patient-Powered Research Network (PPRN) to describe the purpose and structure of their Community Advisory Council. The charter can serve as…
Community Advisory Council Application
This is an application form developed by the Interactive Autism Network (IAN) Patient-Powered Research Network (PPRN) to review and select Community Advisory Council members. This application form could be used…
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…
Partners Through the COPD Foundation's Online Social Community
This resource developed by the COPD Patient-Powered Research Network (PPRN) provides information about the COPD360social platform, the COPD Foundation online social platform for engagement throughout the research process. This platform…
Governing Board Charter Template
This governing board charter was developed by the COPD Patient- Powered Research Network (PPRN) to describe the roles and responsibilities of their governing board. The charter can serve as an…
Writing Team Onboarding Checklist
This onboarding checklist by the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) provides administrative staff a way to track parent/patient activity and…
Rare Organization Snapshot Template
This template was created by the Rare Epilepsy Network (REN) Patient-Powered Research Network (PPRN) to capture information about rare epilepsy organizations and their affiliated conditions within the network. Use this…
Parent Action Committee Charter
This charter was developed by the Phelan-McDermid Syndrome Data Network (PMS_DN) Patient-Powered Research Network (PPRN), in partnership with the Phelan-McDermid Syndrome Foundation and their Parent Action Committee (PAC). The charter…
Governance Policy
This is the National Alzheimer's & Dementia Patient- & Caregiver-Powered Research Network (AD-PCPRN) governance policy, which highlights this Patient-Powered Research Network’s (PPRN) governance and operational policies. This document can be…
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…
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…
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…
