
Patient and Caregiver Engagement in an Era of COVID-19: What did we learn and how do we move forward? [PCC072] Har passerat
Onsdag 6 maj 2026 12:00 - 12:15 G4
Moderatorer: Cristin Lind, Jana BergholtzRapportör: Kerry Kuluski
Spår: Orals Patient & Public Involvement
Background: Patient and caregiver engagement is a core component of high quality health care systems. The Covid-19 pandemic revealed the fragility of patient and family engagement that was not as firmly rooted in the health system as expected. Objectives: To identify key enablers to sustaining patient engagement activities during times of high health system stress (e.g., the COVID-19 pandemic). Methods: A series of case studies were conducted across 5 Canadian provinces and included both health service delivery and social care organizations at local, regional, and provincial levels, as well as health organizations that support improvements in care and patient engagement. 1-1 interviews were conducted with patient partners and organizational leaders from each of the case sites. An inductive thematic analysis was conducted to identify core themes (enablers) to sustaining patient engagement activities during the pandemic. Findings: The following themes represent key enablers to sustaining patient engagement activities during the pandemic: 1) Strong Connection between Organizational Leaders and Patient and Care Partners; 2) Maturation of Context including Entrenched Philosophy of Patient and Family Centred Care; 3) Giving Patient and Care Partners the Space to Lead, Build and Sustain Relationships; 4) Willing Partnership through Meaningful Activities; and 5) Creating New Mechnisms for Engagement. Conclusions: The Covid-19 pandemic challenged the culture that patient engagement efforts require to thrive and revealed the tensions that exist in creating person-centred policies and practices during times of crisis. We have learned from many organizations where not only engagement practices and philosophies survived but were able to thrive. Moving forward, we can consider engagement capabilities in the broader ecosystems of health where engagement needs to grow. We can seek to understand the instrumentality of engagement efforts but also the democratic forces of engagement and dialogic understanding brought about through opportunities for learning and unlearning.
Konferens
GCPCC
GCPCC Kod
PCC072
Föreläsare
Jana Bergholtz Moderator
Patient Partner / Researcher
GPCC, University of Gothenburg
I'm a patient partner (living with cavernoma) with research background (PhD in Earth & Planetary Sciences). At GPCC/University of Gothenburg, my research focus is on patient and public involvement (PPI), with interest in: 1) How to reduce tokenism in PPI?, 2) Representativeness, 3) Pre-conditions and support infrastructures for PPI. You can find me on LinkedIn here: https://www.linkedin.com/in/jana-bergholtz-74298310b/
Kerry Kuluski Rapportör
Research Chair and Professor
Institute for Better Health, Trillium Health Partners and Institute of Health Policy, Management and Evaluation, University of Toronto
Kerry Kuluski, Michelle Marcinow, Carol Fancott, Maggie Keresteci, G Ross Baker