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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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.

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.

Training and Engaging Patients in Research Data Analysis Presentation

This presentation describes the engagement strategies used by the ACTIVATE study team to train their patient partners in data analysis. It includes useful information and resources that could be used by other study teams that are in interested in training lay-person partners on the basics of data analysis.

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.

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.

C3FIT Stroke Stakeholder Engagement One-Pager

This onboarding one-pager from the C3FIT Stroke study team lays out study details, the role of engagement, and the leadership on the study. It can be viewed as a template for a brief informational resource that will help recruit and onboard stakeholder partners.

The SEED Method's Conceptual Model Training

This training deck guides users through the process of selecting a research question. Using this deck helps study teams onboard stakeholders to a PCOR project while also collecting information about topic prioritization for the study team. This deck was made to be adapted by study teams and can be used in tandem with the rest of the SEED Method materials or alone.

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 Advocate Advisory Board Onboarding and Training Manual

This onboarding and training manual can help study teams orient and onboard their stakeholder partners. It includes roles and responsibilities of partners, lay-language forms for partners to complete so they can receive payment for their time and be onboarded into the university's system.

The SEED Method's Patient Stakeholder Identification Matrix

This recruitment strategy spreadsheet was created to help study teams identify and select possible individual and organizational partners. It can also serve as a template for managing engagement over the course of the entire project. It is part of the SEED Method Toolkit, which is linked below.

The SEED Method Complete Toolkit

This toolkit was specifically designed to improve stakeholder recruitment, selection and engagement. This comprehensive document includes an overview of the SEED Method, instructions, example documents – including timelines, meeting agendas, and powerpoint slides – and customizable templates – including organizational documents, facilitation guides, and training materials. An optional evaluation module is also included as part of the toolkit for users who would like to assess SEED Method processes or outcomes.

C3FIT Stroke Clinical Site Engagement Committee Meeting Report Back Form Template

This communication tool ensures that recommendations made at local sites are registered and acted upon by both the local study team and the study's steering committee. This tool walks each issue from the question posed by study staff through to the impact of feedback on the study itself. It is a useful tool both to track internal communications and to share with partners.

"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.

Reach PC Stakeholder Engagement Log

This communication tool tracks touches with stakeholder partners. It will allow your research team to build strong relationships with partners by ensuring timely and clear communication. It lays out both the input received and the ways that it was utilized to improve the project. It can be used internally by the study team or as a shared tool with partners.

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.

Decoding the PaTH of EHR: How It's Collected, How It's Protected

This two-pager on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network. It pairs with a video on YouTube that focuses on the same topic.

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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