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

"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 will help plan meetings, manage discussions, and share results with partners.

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 process as well as include stakeholders in selecting dissemination pathways and audiences.

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.

View additional Community Advisory Council resources: Community Advisory Council Charter | Community Advisory Council Summary

IAN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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 can be adopted by other networks and applied across disease and condition groups to form and support cause groups for their own community.

Health eHeart Alliance formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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 you identify the extent to which your research has incorporated engagement principles.

GPC is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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 and obstacles for leveraging social media in a network, including best practices and case studies to enhance understanding. This information can be used by numerous stakeholders to better understand how to use metrics to inform channel strategy and how collaborations and partnerships can help reach more people.
 
ArthritisPower formerly was a  Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
 
Duke University is the Coordinating Center of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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, an existing online patient community platform. This information can be utilized by researchers to help guide their patient engagement approaches in healthcare research studies.

The study reported in this document was conducted using PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

The study was funded by PCORI through PCORI Award OBS-1505-30683.

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, developed by the Stakeholder, Technology and Research (STAR) (formerly Mid-South) Clinical Research Network (CRN), can be used by other researchers to assess their engagement approaches when conducting research aimed at addressing disparities in health care.
 
STAR  is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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. This can be used to inform development of a governance framework for stakeholder participation in a community and research setting.
 
ADVANCE is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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 used by stakeholders to develop governance and operational policies. 

AD-PCPRN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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 opportunity for stakeholders to share ideas about when, where, and how PCOR/CER can be used to support transformation in a learning health system. It highlights presentations and discussions and outlines their next steps, including the creation of a strategic roadmap to guide stakeholder-driven PCOR/CER in health systems available here.

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 adapted for use across many research settings and stakeholder groups. The toolkit includes step-by-step guidance for engaging patients and community members across seven steps of the research process, as well as tools and resources to support each step.

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 by CRITICAL partners, including agreement to follow the values and principles of CRITICAL and meet the responsibilities and expectations of being a partner. The MOU could be used as an example for other partnerships and collaboratives to follow when outlining partner responsibilities.

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 other teams to introduce PCOR to partners and other collaborators new to PCOR.

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. It could be used by multiple stakeholder groups as an example of how to structure a governance document for any research collaborative.

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 study, as well as recommendations from advisors on how to improve/maximize study recruitment. Several elements of the report may be helpful to other teams as they think about how to evaluate engagement on their own studies. The report also includes several appendices demonstrating examples of advisor outreach (Stakeholder Advisory Board newsletter), dissemination planning (a survey collecting information on where stakeholder advisors get or share information relating to health care), and obtaining feedback (a survey outlining suggested updates to common language used in the clinical area of study [breast cancer] and soliciting stakeholder advisor feedback). A sample interview guide evaluating stakeholder advisor experience is also included.

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 joint replacement research. This guide could be used as an example of best practices for conducting a training webinar. 

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 model for other teams interested in sharing findings from their engagement work.

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 with findings that can serve as a template for others interested in research topic prioritization.

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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