Empowering Patients and Families to Create, Inform and Endorse a New Patient and Family Declaration of Values.

Abstract

In 2019, Niagara Health embarked on a partnership journey to develop the Patient and Family Declaration of Values (PFDoV). The initiative leveraged all five International Association for Public Participation domains of engagement, integrating patient partners (PPs) in all facets of co-design methodology including planning, data collection, analysis and document formation. A qualitative data analysis in grounded theory yielded seven themes forming the PFDoV, fully endorsed by the executive team and board of directors. The model of engagement and co-design empowered PPs to take ownership of the PFDoV creation. This article describes the strengths, weaknesses and lessons learned from our approach.