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 57 results
Patient-Centered Outcomes Research Training Manual: Helping Researchers Initiate and Maintain Patient-Engaged Research Teams
This training manual provides discrete steps, tools and resources that Cystic Foundation (CF) Center research teams can utilize to integrate and maintain patient/caregiver-partners in CF research.
Patient Driven Research Community Research Activities
This brief contains important lessons learned from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth…
Value Proposition Playbook for Participant-Driven Research in Health Care
This resource is an action-oriented guide developed by and for patient and participant-driven research communities (PDRCs) to sustain their work by demonstrating value to their partners, including their participants and…
Strategies for Improving Patient Representativeness in Research Governance Report Issue Brief
This issue brief offers a snapshot of the full Strategies for Improving Patient Representativeness in Research Governance report , which provides examples of governance recruitment and retention practices sourced from…
Digital Strategies for Returning Value to Research Participants Issue Brief
This issue brief offers a snapshot of the full Digital Strategies for Returning Value to Research Participants report (available here), which examines principles for returning value to research participants and…
Digital Strategies for Returning Value to Research Participants Report
This report examines principles for returning value to research participants and provides examples of digitally based engagement strategies sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven…
Strategies for Improving Patient Representativeness in Research Governance Report
This report examines the significance of and strategies for improving patient representativeness in research governance and provides examples of governance recruitment and retention practices sourced from literature scans and case…
Decoding the PaTH of EHR: How It's Collected, How It's Protected
This two-pager on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful…
PaTH to Partnership in Stakeholder-Engaged Research Dissemination Brief
This two-pager summarizes a published paper that discusses Engagement on the PaTH study. By providing a lay language brief, this short piece empowers partners to share their experiences with others…
CISTO External Advisory Board Charter
This board charter template can be used to help study teams clearly lay out the roles of their advisory boards, bodies or committees. Using the format and content provided in…
C3FIT Stroke Stakeholder Engagement One-Pager
This onboarding one-pager from the C3FIT Stroke study team lays out study details, the role of engagement, and the leadership on the study. It can be viewed as a template…
PaTH to Health Newsletter
This newsletter by the PaTH study team includes research updates, spotlights on partners and team members, advertisements for study participants and more. It can be viewed by other research teams…
SHIELD Patient and Caregiver Partner Recruitment Flyer
This recruitment flyer provides multiple entry points for possible study partners, from links to surveys to direct contact information. It will help partners find study teams and study teams find…
The SEED Method's Patient Stakeholder Identification Matrix
This recruitment strategy spreadsheet was created to help study teams identify and select possible individual and organizational partners. It can also serve as a template for managing engagement over the…
PaTH to Health Diabetes Study: Postcards and Digital Newsletters
The PaTH Clinical Research Network (CRN) created these promotional postcards to be distributed to primary care providers, patient partners, and stakeholders to increase their exposure to PaTH's free biannual digital…
Lay Study Guide
This document provides an overview of the PCORnet ® Obesity Antibiotics Study (ABX) in plain, easy-to-understand language. The guide includes an overview of the study process; explains the goals and…
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…
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…
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…
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…
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…
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…
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…
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…
