About the Project
The aim of this research is to gain an in-depth understanding of the patient partner and advisor role as an emerging resource to the Canadian health system. We will describe, map and explore the community of patient partners and advisors across the country, assess the prospects for this role to contribute to health system decision-making and policy, and identify the challenges it faces and how these might be addressed.
Watch Understanding patient partnership in Canadian health systems: Lessons from the Canadian Patient Partner Survey with Julia Abelson (PPEC) and Carolyn Canfield (Patient Advisors Network) to learn about key findings from the survey.
You can also learn more about this study by watching Alberta SPOR SUPPORT Unit’s (AbSPORU) webinar on Understanding patient partnership in health systems: lessons from the Canadian patient partner survey, hosted by the AbSPORU Patient Engagement Journal Club.
Project Outputs
Our project activities are ongoing. We have completed the systematic review of the literature and the survey. Interviews with patient and organizational partners will be completed in Fall 2024. Outputs from the project to date are included below.
The latest paper out of our large pan-Canadian survey of patient partners engaged in Canadian health system settings tackles the topic of compensation in patient partnership, asking over 500 patient partners what types of compensation they’d been offered, whether they felt adequately compensated, and why they wanted to be compensated (or not).
Article: Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey, Health Expectations, January 15, 2024
In this paper, published in SSM – Qualitative Research in Health, we explore the meanings ascribed to concepts of expert, expertise, and experience within the field of patient engagement. Our analysis is based on qualitative responses to one target question: “Do you think the lived experience you bring to your patient partner role makes you an expert?
Article: Exploring meanings of expert and expertise in patient engagement activities: A qualitative analysis of a pan-Canadian survey, SSM – Qualitative Research in Health, vol 4, December 2023
This systematic review, published in Health Research Policy and Systems, describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities.
Article: Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis, Health Research Policy and Systems, January 25, 2023
The first article based on the CPPS survey has been published in Health Expectations. The focus of this article is on the impacts of COVID-19 on patient engagement and partnering based on the survey questions: Did COVID-19 affect your patient partnering activities? If so, how?
Our results identify the various ways in which COVID-19 affected patient partnering activities, along with the benefits and challenges of the switch to virtual/remote engagement activities. We discuss how we can build on the innovations and successful adaptations that were made during COVID-19, as well as the supports that will be needed to sustain these approaches in the future.
Article: The impact of COVID-19 on patient engagement in the health system: Results from a Pan-Canadian survey of patient, family and caregiver partners, Health Expectations, January 13, 2022
Understanding Patient Partnership in Health Systems: Lessons from the Canadian Patient Partner Study
This article presents the main results of the CPPS survey. Published in BMJ Open the focus of this article is on the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada.
Article: Understanding patient partnership in health systems: lessons from the Canadian patient partner survey, BMJ volume 12, issue 9 (updated September 1, 2022)
Webinars
Understanding patient partnership in Canadian health systems: Lessons from the Canadian Patient Partner Survey, hosted by the Public and Patient Engagement Collaborative
Understanding patient partnership in health systems: lessons from the Canadian patient partner survey, hosted by the AbSPORU Patient Engagement Journal Club, November 2022
Research Phases
Literature Review
A synthesis of empirical and theoretical literature about patient partner and advisor roles
Surveys
A survey of patient partners and advisors across Canada
Interviews
In-depth interviews to explore the experiences of patient partners and advisors and the partner organizations they join
Research Analysis
An assessment of the prospects of patient partners/advisors as an emerging resource to health systems
Our Research Partners
Our team brings together the necessary research, policy, health system, clinical and patient expertise from across Canada to tackle this project in a uniquely rigorous and creative way. The PPEC has partnered with researchers, patient partners and patient engagement professionals from the Nova Scotia Health Authority, the Patient Advisors Network, the University of Calgary and the University of Toronto.
Our Funder
