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 - 18 of 18 results
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.
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.
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.
The SMART study team put together this Memoranda of Understanding for their Patient Stakeholder Group and their Study Advisory Committee to ensure that their partners had a clear understanding of the importance of their work and their main responsibilities. These documents could be used as templates or examples by other study teams as they draft governance documents for their stakeholder partners.
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 recruitment flyer provides multiple entry points for possible study partners, from links to surveys to direct contact information. It will help partners find study teams and study teams find partners.
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 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.
This video describes what patient-centered outcomes research (PCOR) is from the point of view of multiple stakeholders, including patients, research investigators, and research staff. The video could be used by other teams to introduce PCOR to partners and other collaborators new to PCOR.
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.
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.
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.
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.