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 40 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.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: GPC

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 Greater Plains Collaborative Clinical Research Network (CRN) and their Rapid PACE online engagement community for investigators. Through Rapid PACE, investigators can present their projects to and solicit feedback from a panel of patients and stakeholders. Other organizations seeking to work with GPC or establish patient and stakeholder reactor panels can use this webinar as a resource.

GPC 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: PaTH

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 PaTH Clinical Research Network (CRN) and their Story Booth project. PaTH’s Story Booth project collects audio stories from patients and caregivers, helping to bring together patients who are interested in getting engaged with researchers who are looking to engage patients around specific topics. Other organizations seeking to work with PaTH or engage patients and stakeholders by collecting audio stories can use this webinar as a resource.

PaTH 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: PCORnet Engagement Workgroup

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 PCORnet Engagement Workgroup and their efforts to develop a set of Core Principles for the network. Engagement Workgroup leadership discuss the Core Principles identified by the group, the process followed for generating the principles, and next steps for implementation across PCORnet.

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.

Patient Partner Position Description by REACHnet

In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient- partner consultant. This resource can be used by researchers and other stakeholder groups seeking to hire or contract with a patient partner to review and evaluate projects for patient-centeredness, participate in communication initiatives, prioritize research topics, and partake in other activities to improve stakeholders’ capacity to conduct patient-centered research.

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

Patient Engagement Officer Description by the Greater Plains Collaborative

In this document, the Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Engagement Officer (PEO). This resource can be used by researchers and other stakeholders who are seeking to hire a PEO to improve engagement through identifying, recruiting, and supporting patient partners and liaising between engagement work of an organization and staff from local sites.

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

Patient Advisors Description by the Greater Plains Collaborative

The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Advisors Council (PAC) patient or caregiver member in this template. This resource can be used by researchers and other stakeholder groups that are interested in creating a PAC to make their research more patient-centered.

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

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.

Agenda Template by REACHnet

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.

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.

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