Patient engagement resources

Patient Advisors Network

The Patient Advisors Network (PAN) is a community of people who have received health services or cared for those who have, and who are committed to improving healthcare as advisors for the good of all across Canada. PAN is a Canadian federally incorporated not-for-profit group. The group is privately funded and looks to attract funding from people and organizations that support their mandate to develop as a group of independent advisors in a community of practice. A 2024 PAN report, Reimagining the Research Landscape, tackles the issue of tokenism when it comes to patient partner engagement. Read about the report in a blog post here.

Strategy for Patient-Oriented Research – Patient Engagement Framework

Developed through a consultative process, this framework outlines key action opportunities. It prepares researchers and other interested parties for worthwhile collaborations in identifying health research priorities, as well as in the design and conduct of research projects.

CIHR’s Citizen Engagement Handbook

This Handbook was developed as a companion guide to CIHR’s Framework for Citizen Engagement. It is designed for CIHR staff leading or supporting citizen engagement activities, incorporating CIHR’s vision for engaging citizens and describing best practices, approaches, and methods that can be applied for effective engagement activities.

SPOR’s Capacity Development Framework

This framework serves as a guide for capacity-building activities for all SPOR partners to develop each partner’s individual capacity development action plans.

Guide to Knowledge Translation Planning at CIHR: Integrated and End-of-Grant Approaches

Knowledge translation (KT) is about raising knowledge users’ awareness of research findings and facilitating the use of those findings. This guide covers integrated knowledge translation (iKT) and end-of-grant KT. It provides a description of the category of KT in question; a brief explanation of the relevant KT factors; a worksheet with questions pertinent to each factor; and more.

BRIC NS patient partner orientation guide series

This guide was co-developed by patient partners, staff at BRIC NS, IWK Health Centre, and the Maritime SPOR SUPPORT Unit. It gives background information about research and patient partner engagement and describes some ways that patients, caregivers, and members of the public can get involved in research.

Maritime Family Practice Research Network

The Maritime Family Practice Research Network (MaRNet-FP) is a primary care practice-based research network. They conduct and support primary care research in practice-based settings to directly benefit patients, providers, and the Maritime provinces.

Maritime SPOR Support Unit

The Maritime SPOR SUPPORT Unit (MSSU) connect the Maritimes to engage in patient-oriented health research. They collaborate with government stakeholders, health authorities, the research community, and patients and caregivers from across New Brunswick, Nova Scotia, and Prince Edward Island. 

Guide patient-citoyen partenaire en recherche

The Quebec SUPPORT Unit created this guide, which mirrors the one BRIC NS developed, but in French.

Understanding Research

Understanding Research is a website that aims to develop a common language and a shared understanding among all stakeholders involved in Patient Oriented Research. Co-developed by the Method Developments and the Research Strategy in Partnership with Patients and the Public components of the Quebec SPOR Support Unit, the website contains textual and video introducing science and research, research ethics, literature reviews, research methodologies, big data, and knowledge translation.

Patient Expertise in Research Collaboration

The Patient Expertise in Research Collaboration (PERC) promotes and supports the meaningful and appropriate engagement of patient partners in primary health care research in Ontario. The materials on their website provide information, resources and methods support to foster partnerships between researchers and patients to conduct patient-oriented.

McMaster University Aging Community and Health Research Unit Patient and Public Engagement Resources

The Aging Community and Health Research Unit provides a collection of the Public and Patient Engagement Collaborative’s publications, presentations, tools and other resources related to public and patient engagement. This includes We need you: Get involved as a patient and public research partner!, resources about data collection, analyzing data, and sharing findings.

Saskatchewan Centre for Patient-Oriented Research onboarding guides

The Onboarding Guide for New Patient-Oriented Research Teams provides a list of things to consider when you begin a new patient-oriented research project. The Onboarding Guide for Patient Partners New to a Patient-Oriented Research Team provides a list of things to consider when you start engaging with a patient-oriented research project. These guides were created by patient partners based on things that are important to them.

Patient and Community Engagement Research Unit

The Patient and Community Engagement Research (PaCER) unit at the O’Brien Institute for Public Health, based at the University of Calgary, is working to transform the role of patients in health and health care delivery in ways that are breaking new ground. PaCERs are patient researchers, citizens with a variety of health conditions trained in qualitative health research, who are creating a new collective research voice by patients, with patients and for patients.

British Columbia’s Patient Voices Network

The Patient Voices Network (PVN) is a community of patients, families and caregivers working together with health care partners to improve BC’s health care system. They have resources for patient partners, health care partners, and community partners.

ENGAGE+

ENGAGE+ is an online resource co-developed to support participatory research with people experiencing social exclusion in society and under-represented in health research, ultimately reducing the barriers between them and the production of scientific knowledge that concerns them. The website contains explanations of approaches and methods (for example, visual methods), that can promote the participation of individuals and communities affected by social inequalities, precariousness or poverty, social exclusion, and low literacy.