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 - 20 of 20 results

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.

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.

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 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 overview of recruitment, site launch information, study resources available, stakeholder successes and other updates. This newsletter can be viewed as an example for other teams.

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.

CISTO External Advisory Board Charter

This board charter template can be used to help study teams clearly lay out the roles of their advisory boards, bodies or committees. Using the format and content provided in this document as a jumping off point, study teams can work in collaboration with their partners to define the scope and responsibilities that will be expected of stakeholders involved with the study.

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.

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.

"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.

Stakeholder Engagement in Studies Toolkit

The Executive Antibiotics Stakeholder Advisory Group (EASAG) for the PCORnet® Obesity Antibiotics Study (ABX) developed this collection of stakeholder engagement tools. The toolkit includes an engagement checklist, Memorandum of Understanding (MOU) template, and stakeholder feedback survey. This toolkit can serve as a guide for study teams to execute stakeholder engagement in their own project.

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.

Engagement Assessment Project: Results of the Engagement Assessment Project

In 2018, the Genetic Alliance Coordinating Center set out to capture and describe the engagement practices and lessons learned across PCORnet®. This presentation may be useful to stakeholders who want to assess and evaluate engagement activities within their organization. 

View the original report: Engagement Assessment Project: Findings and Recommendations

Genetic Alliance was formerly the Coordinating Center of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

Engagement Assessment Project: Findings and Recommendations

This report, developed by the PCORnet® Engagement Committee, supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. This could be used by stakeholder groups to explore and assess the impact of network activities in engagement.

View the PowerPoint presentation of the report: Engagement Assessment Project: Results of the Engagement Assessment Project

The Engagement Committee was formerly a governance committee of PCORnet®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.

Engagement Assessment Tool

This engagement assessment tool developed by the PCORNet® Engagement Committee describes principles to consider throughout your shared research process. Organizations can use these principles to help nurture essential partnerships, shape project values, and drive research progress. This assessment was adapted from a tool provided by the University of Kansas Medical Center for Frontiers: The Heartland Institute for Clinical and Translational Research # UL1TR000001 (formerly #UL1RR033179).

The Engagement Committee was formerly a governance committee of PCORnet®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. 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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