Partnership by design: co-designing an institutional framework for engagement at a leading Canadian pediatric hospital

Abstract

Background: Healthcare institutions are increasingly recognizing the importance of implementing integrated processes for carrying out patient engagement in health systems improvement and research, however, concrete tools and guidance for doing so are needed. While frameworks for engagement exist, most are not specific to pediatric organizational settings where children, youth, families, and community members are engaged across the continuum of clinical care, research, and education. To address this gap, an organization-wide framework for engagement that would have relevance to clinical care, research, and education was co-designed with patient and family advisors and staff at a large pediatric hospital. Objectives: This commentary aims to (i) describe the process of co-designing an organization-wide engagement framework; (ii) share lessons learned about the co-design process; and (iii) document the experience of the co-design process from the perspectives of family advisors and staff. Main body: The framework development process consisted of several steps over the course of a year, including: (i) interviews and focus groups to identify advisor and staff priority areas, (ii) an environmental scan, (iii) a co-design process, (iv) patient consultation, and (v) a framework validation survey. This process revealed important learnings, including the importance of flexible approaches for collaboration, rapport-building, transparency about how advisor and staff input was being used, and highlighting the practical relevance of the framework and its implementation. Conclusion: Developing an organization-wide framework for engagement uncovered key challenges and insights related to co-design, resulting in a ready-to-implement framework. Evaluations indicated the co-design experience was positive and impactful for members. The methods employed in this initiative can be applied to various healthcare settings. Patient or public contribution: The framework development process involved collaboration with patient and family advisors to bring their crucial insights to its content and design. This article was co-authored with family advisors.