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 67 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…
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…
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…
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…
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…
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…
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…
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.
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
