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 - 20 of 20 results
Appalachian Mind Health Initiative IMC Charter
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.
Appalachian Mind Health Initiative SAC Charter
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.
PaTH to Health Just-In-Time Data Analysis Training Part 1
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.
PaTH to Health Just-In-Time Data Analysis Training Part 2
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.
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.
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.
SHIELD Patient and Caregiver Partner Recruitment Flyer
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.
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 Partnership in Stakeholder-Engaged Research Dissemination Brief
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.
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.
PREP IT PCOR Video
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.
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.
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.
PREPARE NOW Publication & Authorship Talking Points
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.
PREPARE NOW Website
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.
PREPARE NOW Work Group Structures & Processes
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.
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.
COMPASS Study Engagement Roadmap Example
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.
Study Participant Newsletter
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.