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.

Displaying 1 - 25 of 80 results

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.

Toolkit for Digital Health Equity

This toolkit was developed by Massachusetts General Hospital for community partners, researchers, clinicians, and other stakeholders who aim to understand and eliminate barriers to virtual engagement and access to mental health care for adults with serious mental illness. It includes findings, best practices, lessons learned, and strategies for engagement. It also includes sample documents and resources. It can apply to a broad spectrum of health equity initiatives. This toolkit is also available in Spanish

Amplifying Peer Priorities in Mood Disorders Research

This document contains a description of peer priorities for mood disorders research compiled from (1) a review of survey data previously collected by DBSA and (2) a multi-stakeholder convening. The goal is for these priorities to inform conversations and collaborations between researchers, clinicians, peers, and mental health advocacy organizations as future mood disorders research is conceptualized and planned.

This document also informed the Recommendations for Creating and Sustaining Meaningful Partnerships Between Researchers and Peers during this project period.

White Paper: ACHIEVING DIGITAL EQUITY: HOW DO WE ENSURE ACCESS, RESOURCES, AND SUPPORT?

This white paper addresses the foundational need for addressing digital literacy and providing training and support for key groups like older adults in digital access. The paper covers strategies and lessons learned from implementing a program to deliver internet access, devices, and supportive training to community members who reported digital access as an issue. It includes information about existing resources and resources that are needed for sustainable solutions to the digital divide.

Virtual Community Engagement Tip Sheets

The Maternal Mental Health Research Collaborative generated 11 community engagement memos/tip sheets on how to engage mothers in research through codesign teams. The memo topics were derived from Community Engagement Studio (CES) sessions and the four codesign team discussions as well as lessons from their virtual engagement strategy.

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.

Community Readiness for Virtual Health Engagement

This document describes the assessment of community readiness for virtual engagement. The group developed a Checklist of Community Readiness for Virtual Health Engagement. This checklist can be used as a tool to systematically assess the experiences, resources, and limitations of using technologies with refugee groups and to elicit details that contribute to culturally appropriate planning and implementation of refugee virtual group meetings. 

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: Supporting Diverse & Inclusive Engagement

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.

PCORnet Engagement Coordinating Center Show & Share Webinar Series: PEDSnet

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 PEDSnet Clinical Research Network (CRN) and their Family and Youth Research Education program (FYREworks). FYREworks is a set of interactive and web-based trainings and toolkits designed to help youth, caregivers, and researchers form research partnerships and conduct patient-centered outcomes research. Other organizations seeking to work with PEDSnet or engage youth patients and their caregivers in research can use this webinar as a resource.
 
PEDSnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: OneFlorida

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 OneFlorida Clinical Research Network (CRN) and their Citizen Scientist program. Through the Citizen Scientist program, community members are engaged as meaningful collaborators throughout the research process and provide feedback on research questions, study design, research materials, and other items. Other organizations seeking to work with OneFlorida or establish a similar program can use this webinar as a resource.
 
OneFlorida is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: CAPriCORN

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 CAPriCORN Clinical Research Network (CRN) and their Patient/Clinician Advisory Committee (PCAC). The PCAC is comprised of patients and clinicians who advise CAPriCORN on data use, research priorities, and engagement processes. Other organizations seeking to work with CAPriCORN or establish a diverse stakeholder advisory committee can use this webinar as a resource.
 
CAPriCORN is a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

PCORnet Engagement Coordinating Center Show & Share Webinar Series: ADVANCE

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 ADVANCE Clinical Research Network (CRN) and their Patient Engagement Panel (PEP). Through the PEP, patients can advise ADVANCE on network-level issues and provide input to researchers on ongoing projects. Other organizations seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.
 
ADVANCE is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI. 

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.

Training and Engaging Patients in Research Data Analysis Presentation

This presentation describes the engagement strategies used by the ACTIVATE study team to train their patient partners in data analysis. It includes useful information and resources that could be used by other study teams that are in interested in training lay-person partners on the basics of data analysis.

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.

Scientific Writing Lay Guide

The PCORnet® Bariatric Study (PBS) developed this scientific writing lay guide to provide an overview of the general scientific manuscript writing process. The guide can be shared with nonscientific stakeholders to gain a better understanding of the various nuances of manuscript writing.

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.

Governance Document

This document by the Patient Outcomes Research to Advance Learning (PORTAL) Clinical Research Network (CRN) provides an overview of their governance structure, including the approach to decision making, data governance, data privacy, conflicts of interest, and scientific misconduct. Researchers and other stakeholders can utilize this document to help develop their own governance process.

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

Health in Our Hands Clinic Manual

This document created by Research Action for Health Network (REACHnet) Clinical Research Network (CRN) provides an overview of their Health in Our Hands initiative, which provides a platform for patient involvement in all aspects of the research process. This manual can be used by researchers to guide the creation of their own engagement materials and initiatives.

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

Lay Study Guide

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.

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

Subscribe to PCORI Emails

Image

Hand pointing to email icon