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 65 results

Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) Patient-Centered Research Priority Report

This Patient-Centered Research Priority Report provides researchers a prioritized list of patient-centered research questions, leading to meaningful studies for end users. It contains research priorities and questions related to substance use and prenatal care informed by patient stakeholders during All-In Meetings. This report includes stakeholder identified research questions, a mind-map, along with notes generated during the meetings.

Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) All-In Meeting Summary

This meeting summary, created by Cincinnati Children's Hospital Medical Center, provides an overview of the methods and results from their four All-In meetings. All stakeholders came together to develop a collective journey map, identify and prioritize patient-centered research questions, and create drafts of the Stakeholder Capacity Needs Report and Stakeholder Engagement Roadmap.

Agenda Template by REACHnet

This agenda template was developed by the Research Action for Health Network (REACHnet). It was created with patient stakeholders’ input for use during study meetings that include stakeholders, such as patients, clinicians, and/or payers, to overcome some common challenges stakeholders face during study-related meetings. This resource can be utilized during all phases of the research process.

Wyoming Community & Practice-Based Research Network MOU

The purpose of this memorandum of understanding (MOU) is to establish the Wyoming Community & Practice-Based Research Network (WY CPBRN). The WY CPBRN is a collaborative group comprising different entities committed to connecting diverse populations to local, high-quality research.  

Equality State Research Network Charter

The Equality State Research Network (ESRN) works closely with partners across Wyoming to develop and answer research questions relevant to providers, educators, patients, families, and others within local communities. The charter describes the responsibilities and operations of the ESRN. 

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 as an example of a co-produced communication tool.

CISTO Year-In-Review Newsletter

The CISTO study team developed this newsletter to highlight the milestones of the first year of the study and preview what is upcoming in the following year. It includes an overview of recruitment, site launch information, study resources available, stakeholder successes and other updates. This newsletter can be viewed as an example for other teams.

C3FIT Stakeholder Research Training

This training deck is an example of a lay language presentation that clearly explains study questions, study design, and leadership structure of a PCOR study. It can be used by study teams to help brainstorm other communication tools.

"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.

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.

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 template to provide a quick overview of your organization for meeting participants.

REN formerly was 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.

Diversity and Inclusion

This document, developed by the PCORnet® Engagement Committee, is intended to provide guiding principles for diversity and inclusion in PCORnet. It can be used by researchers and organizations to shape policies and programs for increasing underrepresented groups in study populations and leadership.

The Engagement Committee was formerly a governance committee of PCORnet, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.

Clinician-Patient Role Play Scenarios

Juno Obedin-Maliver, MD, MPH, MAS, and Mitchell Lunn, MD, MAS, from PRIDEnet Patient-Powered Research Network (PPRN) developed scenario-based training materials intended to gather sexual orientation and gender identity from patients. Use this document to improve communication with LGBTQ patients.
 
PRIDEnet formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

The PRIDE Study Community Partner Consortium MOU

The University of California at San Francisco developed this Memorandum of Understanding (MOU) template to establish a partnership between PRIDEnet Patient-Powered Research Network (PPRN) and a collaborator that will provide local LGBTQ constituents with an opportunity to participate directly in research. The MOU could be used as an example for other partnerships and collaboratives to follow when outlining partner responsibilities.

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

Engagement Assessment Project: Findings and Recommendations

This report, developed by the PCORnet® Engagement Committee, supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. This could be used by stakeholder groups to explore and assess the impact of network activities in engagement.

View the PowerPoint presentation of the report: Engagement Assessment Project: Results of the Engagement Assessment Project

The Engagement Committee was formerly a governance committee of PCORnet®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.

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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