The expanding role of patients in integrated cancer network governance.

Abstract

106 Background: The expanding role of patients (including family) at all levels of healthcare systems is increasingly recognized to favour changes in cancer services delivery. The province of Quebec (Canada) is no exception and promotes patients involvement in governance activities such as the implementation of the National cancer program, local integrated cancer networks, practice guidelines, and patient information material. Generally speaking, network governance refers to the steering process carried out to ensure goals’ achievement. However, we lack sufficient understanding of how patients contribute to this process, at local and national levels. This presentation seeks to report on patients involvement in governance activities within integrated cancer networks. Methods: Design: Qualitative data comprising semi‐structured interviews, focus groups and review of documents. Setting: Four Integrated Local Cancer Networks (ILCN) in Quebec purposively selected to provide variation in size, geographic location and time since implementation of the ILCN. Participants: Key stakeholders including policy-makers (n = 8), managers (n = 56), clinicians (n = 39), patients and their family members (n = 28). Analysis: Content analysis using open-ended coding. Results: This study shows the added value of the formalization of patients involvement in the governance committees at local and national levels of the cancer network. It illustrates the operationalization of the political will to translate the Quebec cancer program ideas into concrete patient-centred practice. Enlightening patients experience through discussion leads to shared decision making, building a “community of patients”, the diffusion of supportive tools, and the development, use and interpretation of performance indicators. Conclusions: Patients involvement is a major, but manageable, change in the integration of care across the cancer continuum. Formalizing the expending role of patients in local and national levels governance committees narrows the macro (hierarchical) and micro (relational) governance divide, which in turn contributes to patient-centred and integrated cancer care.