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 65 results
Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) Patient-Centered Research Priority Report
This Patient-Centered Research Priority Report provides researchers a prioritized list of patient-centered research questions, leading to meaningful studies for end users. It contains research priorities and questions related to substance use and prenatal care informed by patient stakeholders during All-In Meetings. This report includes stakeholder identified research questions, a mind-map, along with notes generated during the meetings.
Empowering Mothers and Providers and Other Stakeholders to Weigh in as Experts in Research (EMPOWER) All-In Meeting Summary
This meeting summary, created by Cincinnati Children's Hospital Medical Center, provides an overview of the methods and results from their four All-In meetings. All stakeholders came together to develop a collective journey map, identify and prioritize patient-centered research questions, and create drafts of the Stakeholder Capacity Needs Report and Stakeholder Engagement Roadmap.
This agenda template was developed by the Research Action for Health Network (REACHnet). It was created with patient stakeholders’ input for use during study meetings that include stakeholders, such as patients, clinicians, and/or payers, to overcome some common challenges stakeholders face during study-related meetings. This resource can be utilized during all phases of the research process.
The purpose of this memorandum of understanding (MOU) is to establish the Wyoming Community & Practice-Based Research Network (WY CPBRN). The WY CPBRN is a collaborative group comprising different entities committed to connecting diverse populations to local, high-quality research.
The Equality State Research Network (ESRN) works closely with partners across Wyoming to develop and answer research questions relevant to providers, educators, patients, families, and others within local communities. The charter describes the responsibilities and operations of the ESRN.
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 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.
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.
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.
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.
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 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.
This is an application form developed by the Interactive Autism Network (IAN) Patient-Powered Research Network (PPRN) to review and select Community Advisory Council members. This application form could be used as an example or template for other teams to develop their own applications.
IAN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
The Health eHeart Alliance (The Alliance) Patient-Powered Research Network (PPRN) created this cause group model to create more opportunities for sustained patient engagement. In this guide, there are resources The Alliance has used to form and support these groups in their community. This model can be adopted by other networks and applied across disease and condition groups to form and support cause groups for their own community.
Health eHeart Alliance formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help you identify the extent to which your research has incorporated engagement principles.
GPC is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
This template was created by the Rare Epilepsy Network (REN) Patient-Powered Research Network (PPRN) to capture information about rare epilepsy organizations and their affiliated conditions within the network. Use this template to provide a quick overview of your organization for meeting participants.
REN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
Stakeholder Contributions to Scientific Manuscripts and a Web-Based Platform for Engaging and Connecting Patients & Caregivers
The PCORnet® Bariatric Study (PBS) team shares their approach to meaningfully including stakeholders in their study. Specifically, the team discusses their manuscript development process and how they leveraged Smart Patients, an existing online patient community platform. This information can be utilized by researchers to help guide their patient engagement approaches in healthcare research studies.
The study reported in this document was conducted using PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
The study was funded by PCORI through PCORI Award OBS-1505-30683.
AD-PCPRN formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
This document, developed by the PCORnet® Engagement Committee, is intended to provide guiding principles for diversity and inclusion in PCORnet. It can be used by researchers and organizations to shape policies and programs for increasing underrepresented groups in study populations and leadership.
The Engagement Committee was formerly a governance committee of PCORnet, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.
The University of California at San Francisco developed this Memorandum of Understanding (MOU) template to establish a partnership between PRIDEnet Patient-Powered Research Network (PPRN) and a collaborator that will provide local LGBTQ constituents with an opportunity to participate directly in research. The MOU could be used as an example for other partnerships and collaboratives to follow when outlining partner responsibilities.
PRIDEnet formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
This report, developed by the PCORnet® Engagement Committee, supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. This could be used by stakeholder groups to explore and assess the impact of network activities in engagement.
View the PowerPoint presentation of the report: Engagement Assessment Project: Results of the Engagement Assessment Project
The Engagement Committee was formerly a governance committee of PCORnet®, the National Patient-Centered Clinical Research Network, from 2016 to 2018. PCORnet has been developed with funding from PCORI.