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 78 results

Partnering for Research

A website created by the University of Vermont & State Agricultural College in partnership with the Multiple Chronic Conditions (MCC) Community to share lessons learned and wisdom gained form partnering for research. This website shares steps, tools, and processes of the Partnering Guide for Research including facilitation tools, engagement techniques, and other resources.

Community Readiness for Virtual Health Engagement

This document describes the assessment of community readiness for virtual engagement. The group developed a Checklist of Community Readiness for Virtual Health Engagement. This checklist can be used as a tool to systematically assess the experiences, resources, and limitations of using technologies with refugee groups and to elicit details that contribute to culturally appropriate planning and implementation of refugee virtual group meetings. 

Guide for Community Partners: How to Use a Tablet to Connect to the Internet

This guide, created by Johns Hopkins University School of Nursing, assists community partners in using a tablet to connect to the internet, handle email, and join video calls. This guide covers key components of digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Research Teams. 

Guide for Researchers: How to Assist Community Partners to Use Digital Technology

This guide, created by Johns Hopkins University School of Nursing, is for research teams aiming to build the digital technology capacity of community partners. This guide covers key components of digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Community Partners. 

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.

Virtual Community Engagement Studio Toolkit

The toolkit builds on the Community Engagement Studio (CES) model and toolkit developed by the Meharry-Vanderbilt Community Engaged Research Core. The Maternal Mental Health Research Collaborative tailored the model for researchers and community experts interested in maternal mental health and/or opioid use and recovery to provide focused guidance for engaging these populations in the virtual medium. This toolkit builds on the project team’s earlier toolkit, (available here). The toolkit provides a comprehensive step-by-step guide to implement the CES model with these populations in a virtual environment.

Case Study Examples: Engaging in PCOR

This Case Study Activity was developed by Pennsylvania State University Hershey Medical Center and used during a community health worker training. This activity provides case studies for participants on patient-centered outcomes research concepts, including ethics; informed consent; study allocation and randomization; data collection methods; following protocols; and dissemination.

Spanish Infographic: What is Research?

An infographic developed by Pennsylvania State University Hershey Medical Center providing a high-level overview of what research is. This infographic is intended for (CHWs) in patient-centered outcomes research. This infographic is intended for use by CHWs to share with potential research participants. This tool is available in English and in Spanish. 

Infographic: What is Research?

An infographic developed by Pennsylvania State University Hershey Medical Center providing a high-level overview of what research is. This infographic is intended for (CHWs) in patient-centered outcomes research. This infographic is intended for use by CHWs to share with potential research participants. This tool is available in English and in Spanish

Infographic: Value of PCOR

An infographic developed by Pennsylvania State University Hershey Medical Center providing a high-level overview of benefits of engaging Community Health Workers (CHWs) in patient-centered outcomes research. The infographic is intended for use with research staff and faculty to encourage engagement with CHWs.

Pharmacy Innovation Network Tools for Partnered Research Engagement Kit

The Research Engagement Kit has resources that can be used by patients, community pharmacists, and researchers. It includes items to help researchers share their study information with pharmacists and patients and information for patients on the questions they should ask when considering participating in research. The kit also includes several videos, including a demo of how a community pharmacist might engage a patient in research.

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.

Community Engagement Studio Toolkit

The toolkit builds on the Community Engagement Studio (CES) model and toolkit developed by the Meharry-Vanderbilt Community Engaged Research Core (CERC). The Maternal Mental Health Research Collaborative (MMHRC) tailored the model for researchers and community experts interested in maternal mental health and/or opioid use/recovery to provide focused guidance for engaging these populations. The toolkit provides a comprehensive step-by-step guide to implement the CES model with these populations.

HICOR Patient Engagement Plan

The Hutchinson Institute for Cancer Outcomes Research (HICOR) Patient Engagement Plan 2020 was created to develop a patient engagement plan which effectively integrates patient partners in research aimed at improving cancer care delivery in community settings. This patient engagement plan can be used to inform integration of patient partners into the research process.

"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.

Engagement Plan

This document by the PCORnet® Bariatric Study (PBS) provides an overview of the study's Engagement Plan, including information about the study’s engagement efforts. This document can serve as a resource to guide researchers and clinicians on the development of their own comprehensive engagement plan.

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.

Smart Patients Dissemination Packet

This dissemination packet by the PCORnet® Bariatric Study (PBS) provides information on how the team engaged patients by partnering with Smart Patients, an online community of more than 10,000 active members. Researchers can utilize this document to gain a better understanding of how to leverage the Smart Patients online community for their own research projects.

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.

Accelerating Clinical Knowledge Generation and Use

In this presentation, Tom Carton, PhD, MS, from Research Action for Health Network (REACHnet) Clinical Research Network (CRN) discusses the process the network used to convene a multi-stakeholder group to identify research priorities among health system leaders. Researchers and other stakeholders can use this document as guidance in setting their own research priorities.

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

Engagement Policy

The Research Action for Health Network (REACHnet) Clinical Research Network (CRN) has developed a comprehensive Engagement Policy to advance the mission of PCORI to meaningfully engage patient and other stakeholders in the research process. This document can serve as guidance for stakeholders interested in patient-centered research.

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

Patient Engagement Toolkit

The Patient Outcomes Research to Advance Learning (PORTAL) Clinical Research Network (CRN) created this toolkit to support researchers who want to engage with patients in conducting research. This toolkit includes information and materials on how to recruit and train patient partners, offering patient engagement services, and collecting patient and scientific partner feedback.

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

Advancing the Science of Community Engaged Research

The PCORnet® Obesity Antibiotics Study (ABX) surveyed their Executive Antibiotics Stakeholder Advisory Group (EASAG) to evaluate their involvement and participation in the study. This document can be used to inform stakeholder inclusion in scientific studies, sustain engagement, and enhance future stakeholder engagement.

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-1505-30699.

Collecting Community Stories: The MyPaTH Story Booth Toolkit

The PaTH Clinical Research Network (CRN) designed this toolkit to help collect rich and meaningful stories from communities. Materials in this toolkit include sample flyers, brochures, and interview prompts. This document can enable researchers and clinicians to understand and better serve the needs of their communities in immediate and tangible ways.

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

2018 Annual Report

NephCure Kidney Network (NKN) Patient-Powered Research Network's (PPRN) 2018 Annual Report summarizes the data provided by registry participants collected from March 2017 to March 2018. Researchers can use the data in this document to better understand nephrotic syndrome, including treatment options, lab values, and diagnosis.

NKN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. 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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