The project Leadership Team developed a website to share what was learned during this project to begin to reconcile past harms and change the way research is conducted with persons with intellectual and/or developmental disabilities and mental health service experiences (IDD-MH) and their families.

The website is organized around four guiding principles that support partnerships between young adults with IDD-MH, family members, and researchers:
• Know about and work to prevent harms in IDD-MH research and practice.
• All aspects of research must have meaningful involvement of persons with IDD-MH and their families.
• When people use their individual strengths, the team is stronger as a whole.
• Research always takes place in a cultural context.

Visit each guiding principle in this website for tools and strategies that support research partnerships between young adults with IDD-MH, family members, and researchers.  Each section incorporates materials that can be used by young adults with IDD-MH, family members, and researchers. The materials include videos, PowerPoint slides, and downloadable handouts.

The website is hosted by the Center for START Services: https://centerforstartservices.org/Truth-and-Reconciliation-Project

This website includes resources that can be used in the broader healthcare research community to support the uptake of engagement practices and methodologies with individuals with the lived experience of IDD-MH and their families.

This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.

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 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. 

A website created by the University of Vermont & State Agricultural College in partnership with the Multiple Chronic Conditions (MCC) Community to share lessons learned and wisdom gained form partnering for research. This website shares steps, tools, and processes of the Partnering Guide for Research including facilitation tools, engagement techniques, and other resources.

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.

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.

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.

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.

The University of Washington Type B Aortic Dissection (TBAD) Collaborative has drafted a governance document for team management.

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 document provides a set of guiding engagement principles for placing diversity, equity, and inclusion at the center of health research partnerships. Developed by PCORI’s Advisory Panel on Patient Engagement, the four principles—Inclusion, Equitable Partnerships, Trust/Trustworthiness, and Accountability/Actionability—are offered to ensure that diversity, equity, and inclusion are an explicit goal of partnerships from the start.

The principles are intended for any person or organization involved in the research community, including leaders and members of multi-stakeholder research teams, leaders and staff of health research organizations, health systems, patient and other stakeholder organizations, and training institutions. The document includes self-assessment questions and practical suggestions for teams to incorporate into activities.

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. 

This guide, created by Johns Hopkins University School of Nursing, assists community partners in using a tablet to connect to the internet, handle email, and join video calls. This guide covers key components of digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Research Teams. 

This guide, created by Johns Hopkins University School of Nursing, is for research teams aiming to build the digital technology capacity of community partners. This guide covers key components of digital technology regularly used by research teams to communicate virtually. This can be used broadly by research teams wanting to engage community members and patients who are not familiar with digital technology. This guide was created in tandem with a guide for Community Partners. 

This Patient-Centered Research Priority Report provides researchers a prioritized list of patient-centered research questions, leading to meaningful studies for end users. It contains research priorities and questions related to substance use and prenatal care informed by patient stakeholders during All-In Meetings. This report includes stakeholder identified research questions, a mind-map, along with notes generated during the meetings.

This meeting summary, created by Cincinnati Children's Hospital Medical Center, provides an overview of the methods and results from their four All-In meetings. All stakeholders came together to develop a collective journey map, identify and prioritize patient-centered research questions, and create drafts of the Stakeholder Capacity Needs Report and Stakeholder Engagement Roadmap.

The toolkit builds on the Community Engagement Studio (CES) model and toolkit developed by the Meharry-Vanderbilt Community Engaged Research Core. The Maternal Mental Health Research Collaborative tailored the model for researchers and community experts interested in maternal mental health and/or opioid use and recovery to provide focused guidance for engaging these populations in the virtual medium. This toolkit builds on the project team’s earlier toolkit, (available here). The toolkit provides a comprehensive step-by-step guide to implement the CES model with these populations in a virtual environment.

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.