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 - 22 of 22 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 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 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.
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 internal newsletter of the REGAIN Trial (University of Pennsylvania), was used to communicate key study updates, give participating research sites information they need, and remind team members of upcoming meetings. The newsletter could be used as a model for internal team communication by other research teams.
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.
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.
Meeting materials from the SAFE Study (Pennsylvania State University) kickoff meeting with research study investigators and patient co-investigators include a study overview; organizational chart; descriptions, membership roster, and responsibilities of study committees. It also includes a directory of study investigators, staff, and partners. Other research teams could use these materials as an example for setting up study-related committees and structuring their own study kickoff meetings and associated materials.
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.
This newsletter to the Patient Advisory Board of the SIMBA study (Kaiser Permanente Washington Health Research Institute) shares project updates, upcoming meeting dates, and other articles of interest. The newsletter could be viewed by other research teams as an example of communication with study advisors between direct interactions.
This document outlines the key timepoints at which patients and other stakeholders will have input on the COMPASS study (Wake Forest University Health Sciences). It is meant to provide a roadmap of engagement activities across the entire project by multiple stakeholders. The document outlines specific engagement activities for intervention design, recruitment and retention, and study implementation that can serve as a planning tool for other teams interested in developing stakeholder engagement.
A newsletter directed at OPC study participants shares an overview of the study and its importance, as well as the role of stakeholder advisors on the study. It also includes information on how current study participants can encourage others to participate in the study. The newsletter can serve as an example to other teams of communication with study participants.
These brief descriptions of various stakeholder advisor roles on the BRITE research study (University of Washington) could be used by other teams as an example of how to structure stakeholder roles and expectations on a similar research study or collaborative effort.
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.