Resources Repository

The Patient-Oriented Research Toolkit, developed by the CHILD-BRIGHT Network with contributions from our team, provides practical guidance for child health researchers on meaningfully engaging partners with lived and living experience throughout the research cycle. It brings together best practices and practical strategies to support authentic collaboration with youth, families, and other key partners.

PASSERELLE Fellowship Program is designed to help you develop your own path in patient oriented research (POR). Read more with the Summary!

This document presents an overview of SPOR (Strategy for Patient-Oriented Research) scholarships and fellowships programs supporting the development and strengthening of POR capacity across patients, students, highly qualified personnel, and researchers. Note that availability of programs, eligibility criteria, deadlines, and links may vary. Consult the organizations’ websites for most up to date information.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2023. Le Cadre d’évaluation de l’engagement des patients et du public (EPP) en recherche, Apprendre Ensemble, est un outil national adaptable, qui peut être utilisé pour planifier et pour évaluer le processus d’engagement avant, pendant et à la fin d’un projet.

McMaster Faculty of Health Science. A guide to help navigate the many helpful resources that exist to help centre equity in engagement work.

Patients Canada (supported by OSSU), 2016. Guidelines for patient/caregiver partners on a research team.

SPOR/SRAP, 2014. The SPOR Patient Engagement Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners.

SPOR Evidence Alliance. A tool designed to provide guidance to patient and public partners on how to engage in health research in a meaningful and collaborative way.

Diabetes Action Canada. Un outil pour comprendre comment les patients partenaires sont impliqués dans la recherche.

Can-SOLVE CKD, 2022. A webinar on mobilizing Indigenous engagement and cultural competency, meeting the Indigenous Initiatives team, and understanding the fundamentals of respectful engagement with Indigenous peoples.

BC SPOR Support Unit, 2018. To provide researchers, trainees, and post-doctoral fellows with an overview of the current areas of ethical consideration discussed in the research literature on ethical engagement in POR.

Unité de soutien SSA Québec, 2018. eSRAP est une plateforme de veille collaborative conçue pour aider des communautés intéressées par un sujet (incluant des chercheurs, cliniciens, décideurs et patients partenaires) à se maintenir à jour sur les dernières publications scientifiques sur ce sujet. eSRAP facilite la sélection des publications pertinentes et l’accès aux publications sélectionnées. eSRAP vise à optimiser le partage des efforts de veille et celui des connaissances, et ultimement à démocratiser les veilles.

OSSU - Ontario SPOR support Unit, 2022. A series of podcasts on patient engagement and how people in Canada access and experience health care service delivery and distribution; how those experiences impact both individual and community health; and the multitude of environmental, systemic, and political factors that favour some and disadvantage many.

Chronic Pain Network, 2021. A webinar series concerning patient engagement in research.

PCORI, 2016. The Engagement Rubric illustrates how input from patient and stakeholder partners can be incorporated throughout the entire research process.

PCORI. A searchable list of publications on engagement in health research sortable by article topic type, types of stakeholders engaged, and phase(s) of research in which engagement occurred, from identifying research questions to sharing study results.

PCORI. A searchable peer-to-peer repository including resources that can inform future work in PCOR.

PCORI, 2021. An Engagement Plan that outlines how stakeholder partners will be involved in all phases of the study.

PCORI, 2020. To help applicants incorporate engagement into their study proposal and budget, this document presents guidance to help researchers identify budgetary items associated with engagement within a research study.

PCORI, 2015. PCORI’s Compensation Framework provides guidance for establishing fair compensation levels for patients, caregivers, and organizations.

PCORI. A guide to prepare research staff to involve research partners in analyzing and interpreting quantitative data.

PCORI. A collection of tools offering different ways to learn about the health research process and be involved in patient-centered outcomes research.

PCORI. A webpage which provides information and resources to help you succeed in conducting research in multi-stakeholder teams.

Kaiser Permanente and PCORI. The Patient Engagement Toolkit offers materials to support researchers who want to engage with patients in conducting research. 

Women's College Research Institute. A module examining strategies to strengthen collaborative research with vulnerable, marginalized or socially excluded communities.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2022. Cet outil a pour objectif d’expliciter les rôles des usagères, des usagers et de leurs proches dans un SSA et de décrire comment ces personnes peuvent, individuellement et collectivement, contribuer à ses multiples dimensions.

McMaster Faculty of Health Science. The Public and Patient Engagement Evaluation Tool (PPEET) is a series of three questionnaires to evaluate public and patient engagement.

McMaster Faculty of Health Science, 2021. Slides of a workshop concerning principles, values, and enablers of high quality patient, family, and caregiver engagement, approaches to implimenting purposeful engagement in practice, as well as challenges, barriers, and solutions to effective patient, family, and caregiver engagement.

McMaster Faculty of Health Science. Un guide qui vise à vous aider à naviguer sur les diverses ressources utiles qui existent afin que vous puissiez mettre l’équité au centre de votre travail d’engagement.

McMaster Faculty of Health Science. The Engage with Impact Toolkit was designed to help organizations evaluate the impact of their patient, family and caregiver engagement programs and activities.

McMaster Faculty of Health Science, 2021. Slides concerning the rationale for engaging community partners in health research, who to engage, how, when and in what, as well as how to embed high-quality engagement practices into your research.

McMaster Faculty of Health Science, 2023. A webinar to introduce participants to the growing number of engagement evaluation tools, discuss the importance of choosing the right tools for your purpose and stage of engagement activity, work through case examples of how to implement different evaluation tools in different contexts, and reflect on the current state of public and patient engagement evaluation.

University of British Columbia, 2018. A workbook to facilitate high-quality partnerships between researchers and patient partners undertaking research projects together by presenting guidance for research project teams to plan their activities.

University of Toronto. A list of resources and guides to answer common questions about patient engagement.

AllerGen NCE, 2017. This webinar discusses what patient engagement is (and isn’t), why it’s important and how BC’s Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit is working to “get it right.”

Health Quality Ontario. A collection of resources that offer a variety of ways ome can play an active role partnering effectively with health providers and organizations – including understanding the power of patient partnering, learning how to become an advisor, and ways to effectively share one's story.

Health Quality Ontario, A number of resources and tools to help integrate patient partnering into your professional domain.

Health Quality Ontario. A list of methods to guide when and how to engage patients and caregivers in your organization’s work.

Unity Health Toronto, 2022. A three-level Resource Guide tailored to any researcher who intends to start learning or expanding their knowledge of equitable patient and community engagement in the design and implementation of research studies.

The Patient Experience Library. A webpage which puts a wealth of patient experience evidence in one place with free search and unlimited downloads.

Alberta Health Services, 2014. Find out more about the values and benefits of patient engagement and discover how patient engagement has improved health outcomes through this toolkit provided by Alberta Health Services.

BRIC NS. A series of guides for patients and caregivers who are interested in becoming involved in healthcare research.

Ministère de la Santé et des Services Sociaux, 2018. Un document qui vise à guider les usagers, les proches, les intervenants et les gestionnaires du ministère de la Santé et des Services sociaux (MSSS) et du réseau de la santé et des services sociaux (RSSS) en matière d’approche de partenariat et à préciser les balises au sein desquelles doit se définir et s’actualiser cette approche.

Arctic Institute of Community-Based Research, 2015. A booklet intended to assist indigenous communities in ensuring that research is conducted ethically and according to community values.

The National collaborating Centre for Aboriginal Health, 2006. A toolkit to provide practical assistance to community policy makers and those who assist them (policy analysts, etc.) in development of Knowledge Translation (KT) policy. The specific focus is on health related knowledge translation.

Noojmowin Teg Health Access Centre, 2003. A resource manual for the development of ethical and culturally appropriate community-based research within the First Nations communities in the Manitoulin area.

Patients Canada (supported by OSSU), 2016. A reflexion on partnering in research from patients' perspective.

Patients Canada (supported by OSSU), 2016. Understanding the basics of partnership with citizens in research.

Patients Canada (supported by OSSU), 2016. To understand the actual experience of researchers when they partner with patients and caregivers on a project where the patients and/or caregivers are members of the research team. The questions are practical and look to identify behaviours that support productive partnerships.

Patients Canada (supported by OSSU), 2016. To understand the actual experience of researchers when they partner with patients and caregivers on a project where the patients and/or caregivers are members of the research team. The questions are practical and look to identify behaviours that support productive partnerships.

SPOR/SRAP, 2015. A guide for capacity-building activities of all SPOR partners, including CIHR, in the development of each partner's individual capacity development action plans.

SPOR/SRAP, 2015. Le Cadre de renforcement des capacités de la SRAP a été conçu pour offrir une vision, des principes et des éléments communs aux partenaires de la SRAP afin d’orienter leurs activités de renforcement des capacités.

SPOR/SRAP, 2014. Le Cadre d'engagement des patients de la SRAP vise à établir des concepts, des principes et des domaines clés pour que l'engagement des patients soit adopté par tous les partenaires de la SRAP.

SPOR/SRAP, 2022. A webpage which contains considerations for researchers and research partners offering payment to patients who act as partners in research and research-related activities.

SPOR/SRAP, 2022. Une page web qui contient des considérations pour les chercheurs et les partenaires de recherche qui offrent une rétribution aux patients qui agissent comme partenaires dans des activités de recherche/liées à la recherche.

SPOR/SRAP, 2022. A glossary which provides lay language definitions for frequently used health research terms.

SPOR/SRAP, 2022. Un glossaire qui présente des définitions en langage clair et simple de termes fréquemment utilisés en recherche en santé.

SPOR Evidence Alliance, 2023. Insights from citizen partners who partnered with evidence-synthesis teams during the COVID-19 pandemic.

SPOR Evidence Alliance. A collection of webinars on patient-oriented research and patient engagement.

SPOR Evidence Alliance, 2021. A tool designed to provide guidance to researchers wishing to engage patients and members of the public in health research in a meaningful, non-tokenistic way.

SPOR Evidence Alliance, 2021. A tool designed to support exploration of the social advantages and/or disadvantages in an individual’s life, and learn how these intersecting social factors can impact a research project.

SPOR Evidence Alliance, 2023. This policy is to outline the procedures in place to identify and manage any real, perceived or potential COIs. This policy describes the different types of COI disclosures, the protocol for reporting and managing significant COIs, and includes the COI disclosure form.

Chronic Pain Network, 2019. A list of tips to help guide researchers' and/or trainees' preparation for research conversations with CPN patient partners.

Chronic Pain Network. A summary of patient engagement and what roles patient partners can have in a project.

Chronic Pain Network. A tool containing recommendations on harmonizing an approach to Patient Partner Compensation across all SPOR Networks and SPOR SUPPORT Units.

Diabetes Action Canada, 2021. A webinar which provides trainees with an opportunity to have their questions about how to incorporate POR in their research design.

Diabetes Action Canada. A tool to understand how patient partners are involved in research.

Diabetes Action Canada. Un document de conseils et bonnes pratiques pour les intervenants en recherche vis-à-vis les patients partenaires.

Diabetes Action Canada. A document providing patient engagement guidelines for researchers, patient partners and anyone new joining Diabetes Action Canada.

Diabetes Action Canada. La recherche et les autres activités liées à la recherche financées par l’Action diabète Canada doivent refléter le temps et les contributions de tous les partenaires.

Diabetes Action Canada. The Diabetes Action Canada Policy on Patient Partner compensation.

IMAGINE. Compensation rates from IMAGINE.

Can-SOLVE CKD. A module dedicated to enhancing the understanding and importance of knowledge translation (KT).

Can-SOLVE CKD, 2022. A toolkit which helps research teams communicate, identify common goals, and define roles for patients. The toolkit includes tips for collaboration in patient engagement, a glossary of terms, and practical tools to support the internal functioning of teams, such as a skills and contributions chart.

Can-SOLVE CKD. A resource to create a culturally safe space for researchers, patient partners and Knowledge Keepers to come together. It will encourage researchers to honor various forms of knowledge alongside Indigenous Knowledge Keepers and help them translate those teachings into practice.

Can-SOLVE CKD, 2019. This webinar series aims to help researchers, team members, and patient partners acquire skills to respectfully engage Indigenous peoples and communities in health research in the spirit of reconciliation.

Can-SOLVE CKD, 2018. A presentation to demystify the research process and to explain how researchers and patients are working together on research projects.

Can-SOLVE CKD, 2021. A webinar concerning patient engagement and integrated knowledge translation (KT), the Can-SOLVE CKD experience with patient engagement and knowledge translation, and opportunities for pateint engagement in integrated knowledge translation.

Can-SOLVE CKD, 2022. In this webinar, you will learn how to incorporate equity, diversity and inclusion into your research.

Canadian Primary Care Research Network (CPCRN). A series of podcasts about and with patient partners (research for you, by you).

CHILD-BRIGHT. Tip Sheet on Engaging Youth in Research.

CHILD-BRIGHT. Fiche de conseils sur l’engagement des jeunes dans la recherche.

CHILD-BRIGHT, 2020. Childbright compensation guidelines.

TNW SPOR Support Unit, 2018. Key findings to help health researchers and others involved in the health system better connect with youth.

Manitoba SPOR Support Unit. A template to help with the financial planning of patient engagement.

Manitoba SPOR Support Unit. A series of short reads on patient engagement in practice and methods of patient engagement.

Manitoba SPOR Support Unit, 2020. This guide will help explore options for participatory approaches and engagement methods at various stages of research, and various levels of patient and public partner involvement.

SCPOR (Saskatchewan SPOR Unit), 2019. A checklist to help and support the integration of Sex and gender consideration in health research.

SCPOR (Saskatchewan SPOR Unit). IRLET measures the degree to which a given project meets patient-oriented research criteria in the context of Indigenous communities.

SCPOR (Saskatchewan SPOR Unit). PORLET was created with Patient Partners to provide a standard set of criteria for determining the level of Patient Partner engagement on POR teams.

SCPOR (Saskatchewan SPOR Unit), 2019. To guide the discussion about how patients may be engaged in a research project.

SCPOR (Saskatchewan SPOR Unit), 2016. To guide the discussion about how patients may be engaged in a research project.

SCPOR (Saskatchewan SPOR Unit). Stratégies pour faire respecter les valeurs et les principes de la Recherche Axée sur le Patient tout en permettant aux patients partenaires de rester à la maison.

SCPOR (Saskatchewan SPOR Unit). Strategies for research teams to uphold the values and principles set out in Patient-Oriented Research while patient partners stay home.

SCPOR (Saskatchewan SPOR Unit). A list of things to consider when you start a patient-oriented research project.

SCPOR (Saskatchewan SPOR Unit). A list of things to consider when you start engaging with a patient-oriented research project.

SCPOR (Saskatchewan SPOR Unit). Honoraria rates from the SCPOR (Saskatchewan).

SCPOR (Saskatchewan SPOR Unit). Honoraria and consultation rates from the SCPOR (Saskatchewan).

BC SPOR Support Unit, 2018. Self-reported questionnaire on patient engagement in research.

BC SPOR Support Unit, 2019. To support patients in uncovering competencies required to engage in patient-oriented research.

BC SPOR Support Unit, 2019. To support researchers in uncovering competencies required to engage in patient-oriented research.

BC SPOR Support Unit. To support patient partners engaging in research teams.

BC SPOR Support Unit, 2019. To support research teams considering or moving into Patient-Oriented Research (POR) by offering a ‘menu’ of evidence-informed practices and strategies for effective engagement.

BC SPOR Support Unit, 2017. A webinar to learn how patients and the public can make meaningful contributions as partners in health research and how the BC SUPPORT Unit is striving to get patient engagement right.

BC SPOR Support Unit. An interactive “road map” that focuses on patient and public partners on a research team, outlining diverse activities that they could engage in across multiple phases of a health research project.

BC SPOR Support Unit, 2019. To help identify the extent to which a proposed research project might be patient-oriented.

Unité de soutien SSA Québec. Cet outil peut servir aux différentes parties prenantes d’une recherche participative organisationnelle pour évaluer rapidement leur partenariat et utiliser les résultats pour améliorer continuellement ce partenariat.

Unité de soutien SSA Québec, 2018. A practice guide addresses aspects of participatory research that are unique to Organizational Participatory Research (OPR).

Unité de soutien SSA Québec, 2018. Survol des différents éléments clés du partenariat avec les patients et le public en recherche. Le guide navigue de questions en questions relativement au pourquoi, avec qui, quand, à quels moments et comment mettre en place une stratégie de partenariat avec les patients et le public de sorte à ce que le lecteur puisse accéder rapidement aux sections d’intérêt.

Unité de soutien SSA Québec, 2022. Cette bande dessinée permet à la population de comprendre pourquoi les équipes de recherche et le personnel médical souhaitent avoir accès aux données de santé. Elle explique également comment l’équipe de CLARET propose de rendre possible le consentement des gens au partage de leurs données dans un contexte sécuritaire, transparent, acceptable et accessible.

Unité de soutien SSA Québec, 2020. Comment impliquer les personnes vulnérables ou ayant un faible niveau de littératie en recherche en santé? Comment réduire les barrières entre la recherche universitaire et les membres de la communauté? Coconstruit par des organismes communautaires et les communautés de recherche canadienne et internationale, le site web bilingue ENGAGE propose des méthodes participatives et des outils visuels et auditifs.

ABSPORU - Alberta SPOR Support Unit, 2018. To assist research teams and other groups in the co-development of terms of reference with their knowledge users and in particular their patient / public members.

OSSU - Ontario SPOR support Unit. A framework that explains principles and practices for promoting equity in patient-oriented research, and the equity-related requirements for researchers working with the Ontario SPOR SUPPORT Unit (OSSU).

OSSU - Ontario SPOR support Unit, 2015. A guide prepared with the objective of supporting researchers, decision makers and other relevant stakeholders involved in a wide range of SPOR-related activities.

OSSU - Ontario SPOR support Unit, 2020. To plan for and involve patient, caregiver, and public research partners in activities and projects.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2022. Ce livre blanc permet à chaque milieu de déployer le partenariat avec les patientes et les patients en fonction de ses particularités et de son historique. Il propose une structure minimale et guide les milieux pour qu’ils s’approprient son opérationnalisation stratégique, tactique et opérationnelle au quotidien.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2018. Principes directeurs pour le dédommagement financier pour la recherche en partenariat avec les patients et le public - Unité de soutien SRAP du Québec et CEPPP.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2018. Permettre à l’équipe de recherche de structurer un mandat clair pour l’implication de patients partenaires ou membres du public dans leur projet de recherche.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP). La Boîte à outils d’évaluation est un registre destiné aux divers acteurs du secteur de la santé, conçue à la suite d’une revue systématique rigoureuse des outils d’évaluation de l’engagement du patient et du public.

Centre d'excellence sur le partenariat avec les patients et le public (CEPPP), 2016. Ce document présente les définitions des principaux concepts fondateurs du partenariat patient en santé et services sociaux.

NL SPOR Support Unit, 2016. Template designed to assist with the development of Patient Engagement plans for health research but can be used to plan other projects,

NL SPOR Support Unit, 2021. Guide to Patient Partner Appreciation - NL SUPPORT and Quality of Care NL Guidelines.

NL SPOR Support Unit, 2021. Guidelines developed by the Newfoundland and Labrador Health Research Ethics Authority.

NL SPOR Support Unit, 2023. This webinar presents HDRN Canada’s Data Access Support Hub (DASH) and how public engagement has been shaping the work of Health Data Research Network Canada.

NL SPOR Support Unit, 2022. This webinar will explore ethical issues related to patient engagement in research.