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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

The Executive Antibiotics Stakeholder Advisory Group (EASAG) for the PCORnet^® Obesity Antibiotics Study (ABX) developed this collection of stakeholder engagement tools. The toolkit includes an engagement checklist, Memorandum of Understanding (MOU) template, and stakeholder feedback survey. This toolkit can serve as a guide for study teams to execute stakeholder engagement in their own project.

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-1505-30699.

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.

This engagement assessment tool developed by the PCORNet^® Engagement Committee describes principles to consider throughout your shared research process. Organizations can use these principles to help nurture essential partnerships, shape project values, and drive research progress. This assessment was adapted from a tool provided by the University of Kansas Medical Center for Frontiers: The Heartland Institute for Clinical and Translational Research # UL1TR000001 (formerly #UL1RR033179).

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.