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 - 12 of 12 results

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.

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.

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.

PaTH to Health: Diabetes, Chocolate Making & Data Extraction Video

This video 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 two-pager that focuses on the same topic.

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 process as well as include stakeholders in selecting dissemination pathways and audiences.

PREPARE NOW Work Group Structures & Processes

This diagram outlines the roles of various study workgroups on the PREPARE NOW study (Duke University). The diagram could serve as an example for other study teams setting up study infrastructure and advisory committees. 

COMPASS Study Engagement Roadmap Example

This document outlines the key timepoints at which patients and other stakeholders will have input on the COMPASS study (Wake Forest University Health Sciences). It is meant to provide a roadmap of engagement activities across the entire project by multiple stakeholders. The document outlines specific engagement activities for intervention design, recruitment and retention, and study implementation that can serve as a planning tool for other teams interested in developing stakeholder engagement.

PREPARE NOW Publication & Authorship Talking Points

This resource provides plain language talking points developed for study investigators, personnel, and advisors to share information about the PREPARE NOW study (Duke University). These talking points could be used as an example for other study teams putting together similar talking points for the purpose of sharing brief study overviews with multiple stakeholder groups.

PREPARE NOW Website

The study website for the PREPARE NOW study (Duke University) contains information on the study, participating study sites, and organizational advisors/partners, as well as a blog with posts on study-related topics (kidney disease) and updates and information from study stakeholder advisors and patient co-investigators. The website can serve as an example to other study teams who want to develop a website as a tool for engagement.

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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