This training manual provides discrete steps, tools and resources that Cystic Foundation (CF) Center research teams can utilize to integrate and maintain patient/caregiver-partners in CF research.

This guide outlines patient- and community-centered processes and guidelines to ensure engagement in research and actionable systems change.

This workbook represents an effort to promote collaborative autism research sharing collective experiences with Project STEER (Stakeholders Engaged in Early Intervention Research) including input directly from stakeholders and lessons learned in building the collaboration. This workbook seeks to empower autism researchers at all levels—from students to senior faculty—to collaborate more closely with autism stakeholders to conduct research that most clearly incorporates and honors the identities, priorities and perspectives of the autism community.

Project STEER (Stakeholders Engaged in Early Intervention Research) is a collaboration borne out of the efforts of researchers, people with autism, parents and clinicians who have worked together to conduct researcher–stakeholder collaboration in autism early intervention research. This workbook represents an effort to promote collaborative autism research by empowering autism researchers at all levels to collaborate more closely with autism stakeholders to conduct research that most clearly incorporates and honors the identities, priorities and perspectives of the autism community.

More on this resource

• View the full research agenda

A guide developed by the Parkinson’s Foundation to provide interested stakeholders with the tools, resources, templates and examples to run a Parkinson’s patient advisory board (ad board).

This case study describes how the cystic fibrosis community successfully built patient-centered outcomes research (PCOR) capacity. It is meant to serve as an illustration for other communities to build PCOR capacity.

This guide describes platforms that patient-centered outcomes research teams can use to create an in-person feel when patients, stakeholders, and research partners meet solely online.

This training manual provides discrete steps, tools, and resources that patient-centered outcomes research-focused teams can employ to successfully integrate and maintain patient, caregiver, and community partners in research.

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 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.

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

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. 

The purpose of this partnership agreement is to establish the African Immigrant Health Research Consortium. The goal of this project is to bring partners together to foster research collaborations and develop a sustainable patient-centered outcomes research (PCOR) network that prioritizes the voice, experiences, and concerns of African immigrant patients, caregivers, community leaders, and organizations.

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.

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.

The Hutchinson Institute for Cancer Outcomes Research (HICOR) Patient Engagement Plan 2020 was created to develop a patient engagement plan which effectively integrates patient partners in research aimed at improving cancer care delivery in community settings. This patient engagement plan can be used to inform integration of patient partners into the research process.

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.

The SMART study team put together this Memoranda of Understanding for their Patient Stakeholder Group and their Study Advisory Committee to ensure that their partners had a clear understanding of the importance of their work and their main responsibilities. These documents could be used as templates or examples by other study teams as they draft governance documents for their stakeholder partners.

This Agreement between community advisors and study team members lays out study details and partner responsibilities. It could be used as an example or template by other study teams.