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.

Browse Tools and Resources

IAN (Interactive Autism Network)

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 as an example or template for other teams to develop their own applications.

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Health eHeart Alliance

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 Alliance has used to form and support these groups in their community. This model...

Greater Plains Collaborative

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 Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help...

Greater Plains Collaborative

GPC Engagement Meeting Norms

The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) developed and used these engagement meeting norms as a way to orient and continually guide stakeholder interactions in their community. Use this document to guide the development of meeting norms for your own community....

DCN (DuchenneConnect Network)

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 these tools and content were identified through: voting and ranking...

COPD PPRN

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 serves as a vital tool for engaging stakeholders to support...

COPD PPRN

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 example of format and types of information to include in a similar description of your own...

COPD PPRN

PPRN Newsletter

This quarterly newsletter features updates from the COPD Patient- Powered Research Network (PPRN). Use this as a template when creating your own community newsletter.

COPD formerly was a Network Partner in PCORnet^®, the National Patient-Centered Clinical Research...

COPD PPRN

Recommended Patient Engagement Standards in Research

This document by the COPD Patient- Powered Research Network (PPRN) describes their standards for engagement of patients in research. Use this to help shape a patient engagement standards in research policy.

COPD formerly was a Network Partner in PCORnet^®, the National...

PARTNERS

Research Collaboration Expectations

The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) has developed this document which outlines the norms and expectations guiding their data sharing process. The document also details who is eligible to work with...