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 46 results
PaTH to Health Just-In-Time Data Analysis Training Part 1
This lay language training deck, along with its second part, clearly lays out the data analysis process. Part One focuses on observational study limitations and benefits, identifying variables of interest…
PaTH to Health Just-In-Time Data Analysis Training Part 2
This lay language training deck, along with its first part, clearly lays out the data analysis process. Part Two focuses on statistical testing to explain study data, understanding statstical jargon…
PaTH to Health Just-In-Time Study Results and Dissemination Training
This training deck lays out the multiple channels through which data can be disseminated once it has been collected and analyzed. This deck could help study teams explain the dissemination…
"How the PAC is Making a Difference" Template
This communication tool clearly represents the positive impacts that partners have on studies. It guides users to lay out the topic, input and impact of engagement with stakeholders. This resource…
C3FIT "What is 'patient-centeredness' in research?" Training
Developed for educating study teams about Patient-Centered Outcomes Research and the C3FIT study, this slide deck can be viewed as a resource for other teams to learn from.
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…
Leveraging Social Media to Raise Awareness and Build Community
Social media specialists Joseph M. Coe, MPA, from the PCORnet® Patient-Powered Research Network (PPRN) ArthritisPower (formerly AR-PoWER) and M. Patricia McAdams, MS, from the PCORnet Coordinating Center explore the opportunities…
Stakeholder Contributions to Scientific Manuscripts and a Web-Based Platform for Engaging and Connecting Patients & Caregivers
The PCORnet® Bariatric Study (PBS) team shares their approach to meaningfully including stakeholders in their study. Specifically, the team discusses their manuscript development process and how they leveraged Smart Patients…
Transformational Approaches to Achieving Health Equity through Engaged Research
This slide deck from a webinar by Consuelo H. Wilkins, MD, MSCI, examines components of diversity and provides a review of engaged research approaches needed to address disparities. This information…
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…
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…
Summary: UPMC Conference on Accelerating Stakeholder-Driven Patient-Centered Outcomes Research andComparative Effectiveness Research in a Learning Health System
This conference summary created by the UPMC Center for High-Value Health Care and the UPMC Wolf Center summarizes the activities from their one-day conference. The meeting aimed to create an…
Learning Health System Transformation: A strategic roadmap for guiding stakeholder-driven health system research
UPMC Center for High Value Health Care's strategic roadmap was created with the aim of promoting stakeholder-driven PCOR/CER in health systems in the near term and over the transformation to…
CRITICAL Membership Agreement/Memorandum of Understanding
A Memorandum of Understanding (MOU) between the members of the Coalition for Recovery and Innovation in Traumatic Brain Injury Care Across the Lifespan (CRITICAL). The MOU outlines the agreements made…
PCOR Toolkit
This toolkit is designed by El Futuro, Inc. specifically to improve the capacity for and knowledge of patient-centered outcomes research for community behavioral health organizations serving Latinos but could be…
Mock Studio on Community Participation in Research Video
This video recording of a mock community studio is an engagement approach employed by the HealthInsight group. The video provides a model that other teams could follow to solicit input…
PREP IT PCOR Video
This video describes what patient-centered outcomes research (PCOR) is from the point of view of multiple stakeholders, including patients, research investigators, and research staff. The video could be used by…
Inborn Errors of Metabolism Collaborative Stakeholder Network Governance Document
This governance document of the Inborn Errors of Metabolism Collaborative highlights organizational structure, roles, and responsibilities for building a network of patients and stakeholders to inform treatment decisions for phenylketonuria…
COMET DCIS Stakeholder Advisory Board Engagement Evaluation Report
This evaluation report by the Alliance for Clinical Trials in Oncology Foundation summarizes the evaluation efforts conducted by the study team to solicit advisor feedback on improvements for the COMET…
Interactive Training Webinar Protocol and Guide for Facilitators
A facilitator’s guide to running a webinar sharing project activities and findings. The subject of the webinar in this guide is the BeTTER SAID project, focused on involving patients in…
Learning Collaborative Dissemination Plan
This dissemination plan was developed by Family Voices, Inc. to support dissemination of engagement activities and findings throughout the course of the project. The dissemination plan could serve as a…
Analysis of Direct Prioritization of Standards
This report developed by El Futuro, Inc. outlines the process used to define standards of engagement developed through the course of the project. The report includes the methods conducted along…
They Survived Cancer. Now the Hard Part: Returning to School
This article from the Johns Hopkins University College of Education highlights the challenges faced by childhood cancer survivors in returning to school, and how the PCORI-funded engagement award project aims…
