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
This lay language training deck, along with its second part, clearly lays out the data analysis process. Part One focuses on observational study limitations and benefits, identifying variables of interest and managing common data issues.
This lay language training deck, along with its first part, clearly lays out the data analysis process. Part Two focuses on statistical testing to explain study data, understanding statstical jargon, and then focuses in on outcomes from the specific study at hand.
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.
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.
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.
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.
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.
This two-pager summarizes a published paper that discusses Engagement on the PaTH study. By providing a lay language brief, this short piece empowers partners to share their experiences with others and for the study team to further distribute their findings on engagement.
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.
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.
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.
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.