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 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.

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.

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 two-pager on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network. It pairs with a video on YouTube that focuses on the same topic.

This recruitment strategy spreadsheet was created to help study teams identify and select possible individual and organizational partners. It can also serve as a template for managing engagement over the course of the entire project. It is part of the SEED Method Toolkit, which is linked below.

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.

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 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 document provides an overview of the PCORnet^® Obesity Antibiotics Study (ABX) in plain, easy-to-understand language. The guide includes an overview of the study process; explains the goals and aims of the project; and lays out details about stakeholder engagement and the use, protection, and analysis of data. Researchers can use these principles to guide the creation of content that is easy to access and understand by a variety of audiences.

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.

The PaTH Clinical Research Network (CRN) created these promotional postcards to be distributed to primary care providers, patient partners, and stakeholders to increase their exposure to PaTH's free biannual digital newsletter. Stakeholders can use this document to draft their own outreach materials.

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

The PCORnet^® Obesity Antibiotics Study (ABX) created this governance plan to detail the governance structure used in the study. Other researchers can use this as an example to create a governance structure for their own research study.

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 survey was developed by the iConquerMS Patient-Powered Research Network (PPRN) to investigate why people belonging to minority groups have lower participation in multiple sclerosis studies. Use this document to learn more about the results of their survey or methods to apply to a survey of your own.

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

This is an application form developed by the Interactive Autism Network (IAN) Patient-Powered Research Network (PPRN) to review and select Community Advisory Council members. This application form could be used as an example or template for other teams to develop their own applications.

View additional Community Advisory Council resources: Community Advisory Council Charter | Community Advisory Council Summary

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

The Health eHeart Alliance (The Alliance) Patient-Powered Research Network (PPRN) created this cause group model to create more opportunities for sustained patient engagement. In this guide, there are resources The Alliance has used to form and support these groups in their community. This model can be adopted by other networks and applied across disease and condition groups to form and support cause groups for their own community.

Health eHeart Alliance formerly was a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help you identify the extent to which your research has incorporated engagement principles.

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

This resource developed by the COPD Patient-Powered Research Network (PPRN) provides information about the COPD360social platform, the COPD Foundation online social platform for engagement throughout the research process. This platform serves as a vital tool for engaging stakeholders to support and participate in meaningful research, help generate ideas, and provide feedback. Organizations can use this resource to inform the design of their own social platforms to better engage their stakeholders throughout the entire research process.

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

This quarterly newsletter features updates from the COPD Patient- Powered Research Network (PPRN). Use this as a template when creating your own community newsletter.

COPD  formerly was a Network Partner in PCORnet^®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) has developed this document which outlines the norms and expectations guiding their data sharing process. The document also details who is eligible to work with PARTNERS and the expectations of researchers. Other teams can use this template to help draft their own plan for data sharing.

PARTNERS formerly was a Network Partner in PCORnet^®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.

This outreach template was developed by PEER within the Community Engaged Network for All (CENA) Patient-Powered Research Network (PPRN) to provide strategies for coordinating outreach to community members. Use the checklist and template in this document to start your own sustainable and successful outreach program.

View the template for prelaunch outreach: PEER Prelaunch Outreach Template

CENA formerly was a Network Partner of PCORnet^®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.