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 - 25 of 28 results
Training and Engaging Patients in Research Data Analysis Presentation
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.
SMART Memorandum of Understanding
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.
C3FIT Stakeholder Partner Memorandum of Understanding
This example of a Letter of Participation and Study Compensation from the C3FIT study outlines the duties of an advisor and lays out how payments will be executed. This document could be used as an example for other study teams to follow when outlining partner responsibilities and terms of participation as a stakeholder partner.
SUMMIT Engagement Survey
This survey, created by the SUMMIT study team, is used to gather feedback on what went well and what could be improved after each study team meeting. The document could be used as a template or an example for other teams interested in obtaining feedback on meeting activities, engagement, and future meetings.
C3FIT Stroke Stakeholder Engagement One-Pager
This onboarding one-pager from the C3FIT Stroke study team lays out study details, the role of engagement, and the leadership on the study. It can be viewed as a template for a brief informational resource that will help recruit and onboard stakeholder partners.
CISTO Advocate Advisory Board Onboarding and Training Manual
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.
CISTO Year-In-Review Newsletter
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.
C3FIT Stroke Clinical Site Engagement Committee Meeting Report Template
This communication tool guides conversations between local sites and their partners while also creating a short report that can be shared with the governance team. This resource will help plan meetings, manage discussions, and share feedback between sites.
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.
C3FIT Stroke Clinical Site Engagement Committee Meeting Report Back Form Template
This communication tool ensures that recommendations made at local sites are registered and acted upon by both the local study team and the study's steering committee. This tool walks each issue from the question posed by study staff through to the impact of feedback on the study itself. It is a useful tool both to track internal communications and to share with partners.
STAMP Stakeholder Advisory Committee Meeting Agenda
This meeting agenda example provides both a template and suggested topics for a Stakeholder Advisory Committee meeting. It can be viewed to develop communication strategies and planning discussions.
"How the PAC is Making a Difference" Template
This communication tool clearly represents the positive impacts that partners have on studies. It guides users to lay out the topic, input and impact of engagement with stakeholders. This resource will help plan meetings, manage discussions, and share results with partners.
STAMP Patient Family Advisory Committee Meeting Agenda
This meeting agenda example provides both a template and suggested topics for a Patient and Family Advisory Committee meeting. It can be viewed to develop communication strategies and planning discussions.
Reach PC Stakeholder Engagement Log
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.
C3FIT "What is 'patient-centeredness' in research?" Training
Developed for educating study teams about Patient-Centered Outcomes Research and the C3FIT study, this slide deck can be viewed as a resource for other teams to learn from.
C3FIT Stakeholder Research Training
This training deck is an example of a lay language presentation that clearly explains study questions, study design, and leadership structure of a PCOR study. It can be used by study teams to help brainstorm other communication tools.
CISTO External Advisory Board Charter
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.
COMET DCIS Stakeholder Advisory Board Baseline Survey
A survey developed by the Alliance for Clinical Trials in Oncology Foundation for collecting information from members of a stakeholder advisory board could be used as an example or template for others working with a stakeholder advisory board to solicit information on stakeholder interest and intent, particularly at the start of advisory board activities, to evaluate experiences against.
REGAIN Trial Newsletter
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.
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.
COMET DCIS Stakeholder Advisory Board Engagement Evaluation Report
This evaluation report by the Alliance for Clinical Trials in Oncology Foundation summarizes the evaluation efforts conducted by the study team to solicit advisor feedback on improvements for the COMET study, as well as recommendations from advisors on how to improve/maximize study recruitment. Several elements of the report may be helpful to other teams as they think about how to evaluate engagement on their own studies. The report also includes several appendices demonstrating examples of advisor outreach (Stakeholder Advisory Board newsletter), dissemination planning (a survey collecting information on where stakeholder advisors get or share information relating to health care), and obtaining feedback (a survey outlining suggested updates to common language used in the clinical area of study [breast cancer] and soliciting stakeholder advisor feedback). A sample interview guide evaluating stakeholder advisor experience is also included.
RadComp Social Media Proposal
A guide to the use of social media in the RadComp study (University of Pennsylvania). The social media plan includes sections defining audiences, objectives, and strategies for social media outreach, as well as plans for risk management and triaging privacy issues that may arise. The guide also includes a sample content calendar, planning for three months of social media posts. The guide could be used as an example to other research teams planning for social media outreach.
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.
WISE Study Kick-Off Meeting Materials
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.
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.