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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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.

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.

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.

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.

Project ACE Resume Blurb for Patients

Research study participants and research study advisors can include this blurb on their resumes. Created by the University of Wisconsin Madison, the document also provides language included in the IRB modification for approval of the use of this language. The population of focus in this research study was teens, a group who may be more interested than others in highlighting research experiences on resumes for college and job applications. The resume blurb and sample language for IRB applications/modifications could be used as a template for other project teams to develop information for inclusion on resumes and CVs for participants and advisors.

CODA Patient Advisor Information

The University of Washington developed this role description for patient advisors participating in the CODA study. It contains information on patient advisor expectations, qualities, role, and time commitment, as well as a study organizational chart. The information presented in the document could inform the work of others developing or supporting work with patient advisors.

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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