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 25 results

Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet® Practices

This report, authored by the PCORnet Engagement Coordinating Center, examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.

This resource was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: INSIGHT

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the INSIGHT Clinical Research Network (CRN) and their Accelerator model of engagement. Through the Accelerator model, INSIGHT convenes topic-specific teams of patients and other stakeholders to rapidly provide guidance on INSIGHT’s policies, research questions, and general direction. Other organizations seeking to work with INSIGHT or establish patient and stakeholder accelerator programs can use this webinar as a resource.

INSIGHT is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

Value Proposition Playbook for Participant-Driven Research in Health Care

This resource is an action-oriented guide developed by and for patient and participant-driven research communities (PDRCs) to sustain their work by demonstrating value to their partners, including their participants and funders. The Playbook draws from the direct experience of PDRCs, as well as evidence and resources on partnership development and nonprofit sustainability, and includes strategies and tools for PDRCs to identify their strengths, understand areas for growth, identify priority audiences, and tailor their value propositions to different audiences. The Playbook was developed as part of the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth.

Strategies for Improving Patient Representativeness in Research Governance Report Issue Brief

This issue brief offers a snapshot of the full Strategies for Improving Patient Representativeness in Research Governance report, which provides examples of governance recruitment and retention practices sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project. With a focus on engaging populations traditionally underrepresented in research in patient-driven research community governance, the brief provides exciting highlights from the report, which gives detailed descriptions of how PDRCs are doing this work and highlights lessons learned from their experiences. The brief concludes with a set of guiding principles with important implications for both funders and researchers. The PDRC LN project was supported by NORC at the University of Chicago (NORC) and AcademyHealth.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Digital Tools for Facilitating Patient/Partner Engagement

Part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices, this townhall-style webinar focuses on digital tools for facilitating patient partner engagement. Panelists Shilpa Venkatachalam (Associate Director, Patient-Centered Research, Global Healthy Living Foundation) and Dana Goodlett (Research Engagement Officer, University of Pennsylvania School of Medicine) discuss unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake (Senior Director, Strategic Partnerships, Evidation Health) moderates the session. This webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research.

PCORnet Engagement Coordinating Center Town Hall Webinar Series: Supporting Diverse & Inclusive Engagement

These slides were developed as part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices. This townhall-style webinar focused on supporting diverse inclusive engagement. Panelists Carolyn Shimmin (Public and Patient Engagement Lead, George and Fay Yee Centre for Healthcare Innovation) and Freddie White-Johnson (Program Director, Mississippi Network for Cancer Control and Prevention) discussed creating an inclusive environment for engagement, strategies for stakeholder retention, and the importance of community-centered approaches. Lisa Stewart (Senior Engagement Officer, PCORI) moderated the session. These slides can be used by researchers and organizations to inform policies and programs for increasing underrepresented population engagement in research and governance.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: STAR

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the STAR Clinical Research Network (CRN) and their Person Centeredness of Research Scale (PCoR Scale). STAR’s PCoR Scale is a seven-item scale that uses 5-point Likert ratings to assess the extent of person-centeredness of research products and can be used by researchers, funders, policymakers, and other stakeholders. Other organizations seeking to work with STAR-CRN or rate the person-centeredness of research could use this webinar as a resource.  
 
STAR is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: REACHnet

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the REACHnet Clinical Research Network (CRN) and their Research Ready training program. REACHnet’s Research Ready: Guide for Engaging Staff in Research Studies shares best practices for engaging clinic staff throughout the research process so clinicians can later implement study findings in clinical care settings. Other organizations seeking to work with REACHnet or engage clinicians in research can use this webinar as a resource.
 
REACHnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: PEDSnet

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the PEDSnet Clinical Research Network (CRN) and their Family and Youth Research Education program (FYREworks). FYREworks is a set of interactive and web-based trainings and toolkits designed to help youth, caregivers, and researchers form research partnerships and conduct patient-centered outcomes research. Other organizations seeking to work with PEDSnet or engage youth patients and their caregivers in research can use this webinar as a resource.
 
PEDSnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: OneFlorida

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the OneFlorida Clinical Research Network (CRN) and their Citizen Scientist program. Through the Citizen Scientist program, community members are engaged as meaningful collaborators throughout the research process and provide feedback on research questions, study design, research materials, and other items. Other organizations seeking to work with OneFlorida or establish a similar program can use this webinar as a resource.
 
OneFlorida is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: CAPriCORN

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the CAPriCORN Clinical Research Network (CRN) and their Patient/Clinician Advisory Committee (PCAC). The PCAC is comprised of patients and clinicians who advise CAPriCORN on data use, research priorities, and engagement processes. Other organizations seeking to work with CAPriCORN or establish a diverse stakeholder advisory committee can use this webinar as a resource.
 
CAPriCORN is a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: ADVANCE

Part of a series presented by the PCORnet Engagement Coordinating Center to showcase and share the successful engagement approaches of PCORnet networks, this recorded webinar features the ADVANCE Clinical Research Network (CRN) and their Patient Engagement Panel (PEP). Through the PEP, patients can advise ADVANCE on network-level issues and provide input to researchers on ongoing projects. Other organizations seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.
 
ADVANCE is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

Digital Strategies for Returning Value to Research Participants Issue Brief

This issue brief offers a snapshot of the full Digital Strategies for Returning Value to Research Participants report (available here), which examines principles for returning value to research participants and provides examples of digitally-based engagement strategies sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project. The brief provides exciting highlights from the report, which dives into how digital tools and technologies present opportunities to address practical limitations by offering a scalable and interactive means for providing information back to participants, enabling collaboration, and cultivating community. The PDRC LN project was supported by NORC at the University of Chicago (NORC) and AcademyHealth.

Digital Strategies for Returning Value to Research Participants Report

This report examines principles for returning value to research participants and provides examples of digitally based engagement strategies sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth. Specifically, this report dives into how digital tools and technologies present opportunities to address practical limitations by offering a scalable and interactive means for providing information back to participants, enabling collaboration, and cultivating community.

Strategies for Improving Patient Representativeness in Research Governance Report

This report examines the significance of and strategies for improving patient representativeness in research governance and provides examples of governance recruitment and retention practices sourced from literature scans and case study interviews from the PCORI-funded Patient/Participant-Driven Research Community Learning Network (PDRC LN) project, which was supported by NORC at the University of Chicago (NORC) and AcademyHealth. With a focus on engaging populations traditionally underrepresented in research in patient-driven research community governance, the report provides detailed descriptions of how PDRCs are doing this work and highlights lessons learned from their experiences. The report concludes with a set of guiding principles with important implications for both funders and researchers.

CAPriCORN Patient and Community Advisory Committee (PCAC) Consultation Abstract Form

The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) created this consultation abstract form for researchers to submit their study plans to the CAPriCORN Patient and Community Advisory Committee (PCAC) for the committee’s review. This template can be adapted by other advisory committees to review researchers’ study plans for input from the PCAC.

CAPriCORN is a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

OCHIN-ADVANCE Engagement Values, Functions, and Metrics

The Accelerating Data Value Across a National Community Health Center (ADVANCE) Clinical Research Network (CRN) outlined its priorities and metrics for engagement across patient and caregiver groups in this snapshot. This resource can be used by researchers and other stakeholder groups seeking to improve their level of engagement with patients and caregivers to support a patient-centered research process.

ADVANCE is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

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.

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.

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.

Smart Patients Dissemination Packet

This dissemination packet by the PCORnet® Bariatric Study (PBS) provides information on how the team engaged patients by partnering with Smart Patients, an online community of more than 10,000 active members. Researchers can utilize this document to gain a better understanding of how to leverage the Smart Patients online community for their own research projects.

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.

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.

COMET DCIS Stakeholder Advisory Board Charter

This stakeholder advisory charter was developed by the Alliance for Clinical Trials in Oncology Foundation to describe the composition, roles and responsibilities of the COMET stakeholder advisory board. The charter can serve as an example of format and types of information to include in a similar description of a stakeholder group for other studies.

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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