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 - 19 of 19 results
Personalized Treatments for Depressive Symptoms in Patients with Advanced Heart Failure - Engagement Presentation
This short, graphically pleasing summary of the impact that engagement had on study design and conduct was presented to study stakeholders so they could understand how important their input was to this study. This format could be used by other study teams as a model to close the feedback loop with stakeholder partners.
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.
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.
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.
Personalized Treatments for Depressive Symptoms in Patients with Advanced Heart Failure - Stakeholder Engagement Survey
This survey was developed by the study team to better understand stakeholder partners' experiences as advisors. It could be used as a template or an example for other teams interested in obtaining feedback from study partners on their engagement experience.
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.
This Agreement between community advisors and study team members lays out study details and partner responsibilities. It could be used as an example or template by other study teams.
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 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 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 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.
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 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.
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.
Patient Advisory Team Application for Effect of Integrating Mental and Physical Health on Patients' Experiences of Care Research Study
This is an application form used to review and select study advisors, developed by Providence Portland Medical Center. The application form could be used as an example or template for other teams developing or supporting advisory committees or other partnerships.
Meeting materials shared with stakeholder advisors as part of the study kickoff meeting present a study overview and elements of the study protocol in an easily understandable format. The materials could be used as a model by other teams looking to introduce study protocol and intervention elements to stakeholder advisors.