This brief contains important lessons learned 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, describing the functions and capacities of PDRCs in the health research landscape that could be a helpful tool for PDRCs to identify and articulate their value to potential research partners. PDRC research activities covered in this brief include funding research, leading or collaborating on research, connecting research stakeholders, providing education and training to facilitate research, collecting and sharing data, disseminating and implementing research findings, and research advocacy. Through the broad array of research activities described in this brief, PDRCs keep patient, participant, and caregiver values and priorities central to the research enterprise.

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.

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.

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])

Part of a series presented by the PCORnet Engagement Coordinating Center to share promising stakeholder engagement practices, this townhall-style webinar focuses on building stakeholder capacity to engage around highly technical content. Panelists Monique Does (Research Project Manager, Kaiser Permanente Division of Research) and Liz Salmi (Senior Strategist of Research Dissemination, OpenNotes) discuss effective tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (Patient Partner, PaTH Network) moderates the session. This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics.

Speaker Contact Information: Monique Does, MPH, Senior Research Project Manager, Kaiser Permanente Division of Research ([email protected]); Liz Salmi, Communications & Patient Initiatives Director, OpenNotes (https://www.linkedin.com/in/lizsalmi/); Greg Merritt, PhD, Founder and CEO, PatientisPartner, LLC and Patient Partner, PaTH Network ([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 share promising stakeholder engagement practices, this townhall-style webinar focuses on scaling a culture of engagement in research. Panelists Al Richmond (Executive Director, Community-Campus Partnerships for Health) and Libby Hoy (Founder/CEO, PFCCpartners) discuss the role of leadership in promoting engagement, share topics on promoting support for engagement, and provide strategies to help leaders influence engagement. Rebekah Angove (Vice President, Patient Experience and Program Evaluation, Patient Advocate Foundation) moderates the session. Researchers and organizations seeking to grow or expand a culture of research engagement in their own institutions can use this webinar as a resource.

Speaker Contact Information: Al Richmond, MSW, Executive Director, Community-Campus Partnerships for Health ([email protected]); Libby Hoy, Founder/CEO, PFCCpartners ([email protected]); Rebekah Angove, PhD, Executive Vice President, Patient Advocate Foundation ([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])

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.

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.

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.

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.

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.