Engagement of patient and family advisors in health system redesign in Canada

OBJECTIVES: Globally, there has been a shift towards integrated care delivery and patient-centredness in the design of health services. Such a transformation is underway in Ontario, which is progressively using an interprofessional team-based approach known as Ontario Health Teams (OHTs) to deliver care. During their initial development, OHTs were required to integrate patient and families’ preferences, experiences and opinions in the form of consultation and partnership with patient and family advisors (PFAs). This study aimed to understand how PFAs were involved in the early stages of planning for health system change and the perceived benefits of including PFAs in system reform. METHODS: This study used a qualitative descriptive design. Semi-structured interviews were conducted with 126 participants at 12 OHTs, including PFA (n = 16) and non-PFA (n = 110) members (e.g. clinicians). Data were analysed thematically. RESULTS: We identified four themes; mechanisms of engagement, motivations to engage, challenges to PFA engagement and PFAs’ impact and added value. Overall, participants viewed PFA engagement positively and PFAs felt valued and empowered. There remain logistical challenges around PFA compensation, and the amount of time and training expected of PFAs. However, all participants believed that developing an understanding of the patient, caregiver and family experience will strengthen the engagement of PFAs in OHT planning, decisions and policies. CONCLUSIONS: Diverse approaches to and stages of PFA engagement fostered meaningful and highly valued contributions to OHT development. These were considered critical to successfully achieving the mandate of patient-centred care reform.