BackgroundPeople living with and beyond cancer (PLC) receive various forms of specialty care at different locations and many interventions concurrently or over time. They are affected by the operation of professional and organizational silos. This results in undue delays in access, unmet needs, sub-optimal care experiences and clinical outcomes, and human and financial costs for PLCs and healthcare systems.National cancer control programs advocate organizing in a network to coordinate actions, solve fragmentation problems, and thus improve clinical outcomes and care experiences for every dollar invested. The variable outcomes of such networks and factors explaining them have been documented. Governance is the “missing link” for understanding outcomes. Governance refers to the coordination of collective action by a body in a position of authority in pursuit of a common goal. The Quebec Cancer Network (QCN) offers the opportunity to study in a natural environment how, why, by whom, for whom, and under what conditions collaborative governance contributes to practices that produce value-added outcomes for PLCs, healthcare providers, and the healthcare system.Methods/designThe study design consists of a longitudinal case study, with multiple nested cases (4 local networks nested in the QCN), mobilizing qualitative and quantitative data and mixed data from various sources and collected using different methods, using the realist evaluation approach. Qualitative data will be used for a thematic analysis of collaborative governance. Quantitative data from validated questionnaires will be analyzed to measure relational coordination and teamwork, care experience, clinical outcomes, and health-related health-related quality of life, as well as a cost analysis of service utilization. Associations between context, governance mechanisms, and outcomes will be sought. Robust data will be produced to support decision-makers to guide network governance towards optimized clinical outcomes and the reduction of the economic toxicity of cancer for PLCs and health systems.

Individuals living with cancer have a wide range of needs throughout the disease trajectory. To better meet them, the Quebec Cancer Control Program (PQLC) implemented the oncology nurse navigator role. While this practitioner has already been integrated into the majority of oncology teams, the role still lacks precision when it comes to its functions within care teams. The support function that deals indiscriminately with "the full spectrum of care and services" consolidated under the larger constructs of adaptation and rehabilitation provided to the individual with cancer and their loved ones requires professional skills and organizational resources, which would improve with clarifying. The goal of this study is to better understand the oncology nurse navigator (ONN) support function, first from the perspective of individuals living with cancer and, second, from the perspective of ONNs themselves. The first objective, detailed in this first part of two, is to explore, from the perspective of people living with cancer, the nature of their needs and support provided by the ONN along the disease trajectory. In all, five individuals living with cancer and provided with an ONN were recruited. The participants expressed support needs at all levels regarding the ONN particularly in the emotional (56%) and informational areas. Moreover results suggest that symptom management (physical area) and all-around coordination (care interventions, appointments, exams, practitioners) in the practical area are paramount throughout the care trajectory.

Medical genetic services are facing an unprecedented demand for counseling and testing for hereditary breast and ovarian cancer (HBOC) in a context of limited resources. To help resolve this issue, a collaborative oncogenetic model was recently developed and implemented at the CHU de Québec-Université Laval; Quebec; Canada. Here, we present the protocol of the C-MOnGene (Collaborative Model in OncoGenetics) study, funded to examine the context in which the model was implemented and document the lessons that can be learned to optimize the delivery of oncogenetic services. Within three years of implementation, the model allowed researchers to double the annual number of patients seen in genetic counseling. The average number of days between genetic counseling and disclosure of test results significantly decreased. Group counseling sessions improved participants’ understanding of breast cancer risk and increased knowledge of breast cancer and genetics and a large majority of them reported to be overwhelmingly satisfied with the process. These quality and performance indicators suggest this oncogenetic model offers a flexible, patient-centered and efficient genetic counseling and testing for HBOC. By identifying the critical facilitating factors and barriers, our study will provide an evidence base for organizations interested in transitioning to an oncogenetic model integrated into oncology care; including teams that are not specialized but are trained in genetics.

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