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.
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Patient Driven Research Community Research Activities
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.
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.
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
PCORnet Engagement Coordinating Center Town Hall Webinar Series: Supporting Diverse & Inclusive Engagement
PCORnet Engagement Coordinating Center Show & Share Webinar Series: STAR
PCORnet Engagement Coordinating Center Show & Share Webinar Series: REACHnet
PCORnet Engagement Coordinating Center Show & Share Webinar Series: PEDSnet
PCORnet Engagement Coordinating Center Show & Share Webinar Series: OneFlorida
PCORnet Engagement Coordinating Center Show & Share Webinar Series: CAPriCORN
PCORnet Engagement Coordinating Center Show & Share Webinar Series: ADVANCE
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.
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.
OCHIN-ADVANCE Engagement Values, Functions, and Metrics
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.
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.
Personalized Treatments for Depressive Symptoms in Patients with Advanced Heart Failure - Stakeholder Engagement Survey
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.
Personalized Treatments for Depressive Symptoms in Patients with Advanced Heart Failure - Engagement Presentation
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.
C3FIT Stroke Clinical Site Engagement Committee Meeting Report Template
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.
The SEED Method Complete Toolkit
This toolkit was specifically designed to improve stakeholder recruitment, selection and engagement. This comprehensive document includes an overview of the SEED Method, instructions, example documents – including timelines, meeting agendas, and powerpoint slides – and customizable templates – including organizational documents, facilitation guides, and training materials. An optional evaluation module is also included as part of the toolkit for users who would like to assess SEED Method processes or outcomes.
PaTH to Health Newsletter
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.