The complexity of engaging community ‘lived experience’ in health service co-design processes: Critical reflection from a case study in Ontario, Canada

Background: The engagement of individuals with lived or living experience (PWLE) of accessing various health services or experiencing certain health conditions is increasingly promoted within health services co-design processes as crucial to enhancing service delivery and quality.

Purpose: This qualitative case study presents findings and entry points for critical reflection from an evaluation of a health service co-design process in Ontario, Canada involving PWLE. From a researcher-practitioner team, and grounded in the case study context, potential tensions and complexities to critically consider when engaging PWLE in co-design are highlighted, alongside practice implications.

Results: First, equitable and diverse recruitment and representation is discussed, along with the need for a flexible, accommodating, and intentional approach to engaging diverse groups. Second, tensions in navigating power imbalances and pre-existing dynamics within a hybrid governance model involving PWLE and service providers are presented, along with potential approaches for consideration. Third, a need for sustained and intentional support for PWLE inclusion as initiatives evolve is described, along with a broader need for flexibility and nimbleness in the practical management of these types of dynamic co-design processes. Finally, the challenges involved in evaluating complex, dynamic processes, such as in the case study, are acknowledged.

Conclusion: Overall, this case study illustrates the complexity of factors that shape the engagement of community ‘lived experience’ within health service co-design. By complicating the discourse around lived experience engagement, this study aims to contribute to the strengthening of co-design processes for enhanced health service co-design and delivery.