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.

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Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in CER

The project Leadership Team developed a website to share what was learned during this project to begin to reconcile past harms and change the way research is conducted with persons with intellectual and/or developmental disabilities and mental health service experiences (IDD-MH) and their families.

The website is organized around four guiding principles that support partnerships between young adults with IDD-MH, family members, and researchers:
• Know about and work to prevent harms in IDD-MH research and practice.
• All aspects of research must have meaningful involvement of persons with IDD-MH and their families.
• When people use their individual strengths, the team is stronger as a whole.
• Research always takes place in a cultural context.

Visit each guiding principle in this website for tools and strategies that support research partnerships between young adults with IDD-MH, family members, and researchers.  Each section incorporates materials that can be used by young adults with IDD-MH, family members, and researchers. The materials include videos, PowerPoint slides, and downloadable handouts.

The website is hosted by the Center for START Services: https://centerforstartservices.org/Truth-and-Reconciliation-Project

This website includes resources that can be used in the broader healthcare research community to support the uptake of engagement practices and methodologies with individuals with the lived experience of IDD-MH and their families.

GRID Toolkit

This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.

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.

White Paper: ACHIEVING DIGITAL EQUITY: HOW DO WE ENSURE ACCESS, RESOURCES, AND SUPPORT?

This white paper addresses the foundational need for addressing digital literacy and providing training and support for key groups like older adults in digital access. The paper covers strategies and lessons learned from implementing a program to deliver internet access, devices, and supportive training to community members who reported digital access as an issue. It includes information about existing resources and resources that are needed for sustainable solutions to the digital divide.

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. 

Patient Partner Position Description by REACHnet

In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient- partner consultant. This resource can be used by researchers and other stakeholder groups seeking to hire or contract with a patient partner to review and evaluate projects for patient-centeredness, participate in communication initiatives, prioritize research topics, and partake in other activities to improve stakeholders’ capacity to conduct 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 Officer Description by the Greater Plains Collaborative

In this document, the Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Engagement Officer (PEO). This resource can be used by researchers and other stakeholders who are seeking to hire a PEO to improve engagement through identifying, recruiting, and supporting patient partners and liaising between engagement work of an organization and staff from local sites.

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

Patient Advisors Description by the Greater Plains Collaborative

The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Advisors Council (PAC) patient or caregiver member in this template. This resource can be used by researchers and other stakeholder groups that are interested in creating a PAC to make their research more patient-centered.

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

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.

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.

PASS Study Partnership Charter

The PASS Study's Partnership Charter lays out study information as well as specifics on engagement like the partnership's structure, members, principles and activities. This charter could be used as an example for other study teams to follow when outlining the details of an advisory board.

Appalachian Mind Health Initiative IMC Charter

This Charter from the Appalachian Mind Health Initiative lays out the membership, committee operations, and responsibilities of the study's Implementation Monitoring Committee, including required training. This charter could be used as an example for other study teams to follow when outlining the details of a committee focused on implementation monitoring.

National & Local Statements of Work Template

These Statements of Work for the national and local stakeholder committees lay out important project information, partnership values, partner responsibilities, and important logistical information such as compensation processes. This Statement of Work could serve as a template or an example for other study teams as they draft governance documents for their stakeholder partners.

Appalachian Mind Health Initiative SAC Charter

This Study Advisory Committee's Charter from the Appalachian Mind Health Initiative lays out the membership, committee operations, and responsibilities of the study's Stakeholder Advisory Committee. This charter could be used as an example for other study teams to follow when outlining the details of an advisory board.

SUMMIT Engagement Survey

This survey, created by the SUMMIT study team, is used to gather feedback on what went well and what could be improved after each study team meeting. The document could be used as a template or an example for other teams interested in obtaining feedback on meeting activities, engagement, and future meetings.

SMART Memorandum of Understanding

The SMART study team put together this Memoranda of Understanding for their Patient Stakeholder Group and their Study Advisory Committee to ensure that their partners had a clear understanding of the importance of their work and their main responsibilities. These documents could be used as templates or examples by other study teams as they draft governance documents for their stakeholder partners.

C3FIT Stakeholder Partner Memorandum of Understanding

This example of a Letter of Participation and Study Compensation from the C3FIT study outlines the duties of an advisor and lays out how payments will be executed. This document could be used as an example for other study teams to follow when outlining partner responsibilities and terms of participation as a stakeholder partner.

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. 

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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