Health systems globally have been focusing their efforts to better engage patients, caregivers and families. However, the pandemic caused disruptions across the health system exposing the precarious state of patient engagement (i.e., meaningful collaborations partnering with patients, caregivers, families and/or community members). This project was conducted in collaboration with Healthcare Excellence Canada to ask the question: “How were healthcare, government and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?”  

The first stage of this work involved a review of the literature to understand globally what was happening with patient engagement activities in the early days of the pandemic. The review provided examples mainly around changes to clinical care (e.g., use of virtual technology to connect caregivers to patients and care teams).  

The review informed the second stage of work; a qualitative, multiple case study where 33 people were interviewed from a variety of healthcare (e.g., hospital), government (e.g., provincial health authority), and patient partner organizations across five provinces in Canada.  Interviews were held virtually or by phone between June and October 2020 (first two waves of COVID-19 in Ontario) with an additional case added in March 2021 during wave three.  

Many patient engagement activities were paused at the onset of the pandemic, but some organizations were able to continue or adapt activities as time went on. Patient partners were involved in activities across the spectrum ranging from sharing information, peer support, co-design, and decision-making at both organizational and provincial levels. We learned the importance of leadership support for engagement activity; providing meaningful roles for patient partners; recognizing patient partners as leaders and leveraging technology as a tool to sustain engagement activities.  

What followed was a Special Journal Issue in Healthcare Papers: Nurturing Engagement Capable Environments: Strengthening Relationships with Partners in Communities, which includes perspectives from additional health and social care organizations across Canada. A number of leaders reflect on lessons learned and how to forge ahead in a new era of engagement which recognises and leverages the strengths of local communities. 

This work has produced a case study report and several publications, including the aforementioned Special Issue.  

• • 2021 Publication: A scoping review of patient engagement activities during COVID-19: More consultation, less partnership
  • 2022 Report: Patient Engagement in the Era of COVID-19 (PDF, 800kb)
  • 2023 Publication: A qualitative study exploring how patient engagement activities were sustained or adapted in Canadian healthcare organizations during the COVID-19 pandemic
  • 2024 Special Issue: Patient and caregiver engagement in the era of COVID-19: What did we learn and how can we move forward?