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.

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.

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.

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.

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.

Speaker Contact Information: Shilpa Venkatachalam, PhD, MPH, Director, Patient-Centered Research Operations and Ethical Oversight, Global Healthy Living Foundation ([email protected]); Dana Goodlett, MPH, MA (https://www.linkedin.com/mwlite/in/dana-l-santos-goodlett-mph-ma-92a5a38a); Bray Patrick-Lake, MFS, former Senior Director, Strategic Partnerships, Evidation Health ([email protected])

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.

Speaker Contact Information: Carolyn Shimmin, Public and Patient Engagement Lead, George and Fay Yee Centre for Healthcare Innovation ([email protected]); Freddie White-Johnson, MPPA,Founder/President & CEO, Fannie Lou Hamer Cancer Foundation ([email protected]); Lisa Stewart, MA, former Senior Engagement Officer, PCORI ([email protected])

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.

Speaker Contact Information: Susan Lowe, PCORnet Engagement Workgroup Co-Lead ([email protected]); Neely Williams, PCORnet Engagement Workgroup Co-Lead ([email protected])

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.

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.

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.

This short, graphically pleasing summary of the impact that engagement had on study design and conduct was presented to study stakeholders so they could understand how important their input was to this study. This format could be used by other study teams as a model to close the feedback loop with stakeholder partners.

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.

This survey was developed by the study team to better understand stakeholder partners' experiences as advisors. It could be used as a template or an example for other teams interested in obtaining feedback from study partners on their engagement experience.

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.

This training deck guides users through the process of selecting a research question. Using this deck helps study teams onboard stakeholders to a PCOR project while also collecting information about topic prioritization for the study team. This deck was made to be adapted by study teams and can be used in tandem with the rest of the SEED Method materials or alone.

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.

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.

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.

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.