Patient participation in cancer network governance: a six-year case study

Abstract

Background Patient participation in decision-making has become a hallmark of responsive healthcare systems. Cancer networks in many countries have committed to involving people living with and beyond cancer (PLC) at multiple levels. However, PLC participation in network governance remains highly variable for reasons that are poorly understood. This study aims to share lessons learned regarding mechanisms that enable PLC participation in cancer network governance. Methods This multiple case study, using a qualitative approach in a natural setting, was conducted over six years in three local cancer networks within the larger national cancer network in Quebec (Canada), where PLC participation is prescribed by the Cancer Directorate. Data were collected from multiple sources, including individual and focus group interviews (n = 89) with policymakers, managers, clinicians and PLC involved in national and local cancer governance committees. These data were triangulated and iteratively analysed according to a framework based on functions of collaborative governance in the network context. Results We identify three main mechanisms that enable PLC participation in cancer network governance: (1) consistent emphasis on patient-centred care as a network objective; (2) flexibility, time and support to translate mandated PLC representation into meaningful participation; and (3) recognition of the distinct knowledge of PLC in decision-making. The shared vision of person-centred care facilitates PLC participation. The quality of participation improves through changes in how committee meetings are conducted, and through the establishment of a national committee where PLC can pool their experience, develop skills and establish a common voice on priority issues. PLC knowledge is especially valued around particular challenges such as designing integrated care trajectories and overcoming barriers to accessing care. These three mechanisms interact to enable PLC participation in governance and are activated to varying extents in each local network. Conclusions This study reveals that mandating PLC representation on governance structures is a powerful context element enabling participation, but that it also delineates which governance functions are open to influence from PLC participation. While the activation of mechanisms is context dependent, the insights from this study in Quebec are transferable to cancer networks in other jurisdictions seeking to embed PLC participation in decision-making.

Unravelling collaborative governance dynamics within healthcare networks: a scoping review

“…In Canada, the 2015 healthcare care network reforms set the agenda for the reorganization of primary HN, the formation of strategic communities and the creation of the Quebec Cancer Network ( Wankah et al ., 2018 ; Tremblay et al ., 2019 , Breton et al ., 2013 ; Audet and Roy, 2016 ; Tremblay et al ., 2021 ). In Portugal, the merger of primary HN with social care facilities has facilitated the integration of health systems through the creation of the Mission Unit for Integrated Continuing Care ( Franco and Duarte, 2012 )…”

“…Decentralized HN are considered to be flexible organizational forms which favour full integration between health and social services, and improve relational coordination between various stakeholders and resilience to address wicked health challenges, such as the coordination of cancer and mental health clinical pathways ( Tremblay et al ., 2019 , Schneider et al ., 2019 , Tremblay et al ., 2021 ). HN here can be considered complex adaptive social systems that favour better knowledge sharing, efficient mutualization of resources, staff pooling and cross-boundary institutional capacity building ( Bernardo et al ., 2012 ).…”

“…Our scoping review showed that effective collaborative dynamics within a HN depends on the appropriate mix between soft leadership capabilities with formal operational management and procedural arrangements ( Mervyn et al ., 2019 ). Many scholars emphasized the crucial role played by soft skills, including interpersonal and intrapersonal relationships, knowledge exchange and trust relationship, in maintaining effective and sustainable collaboration ( Larsen et al ., 2021 ; de Brún and Mcauliffe, 2020 ; Hyrkäs et al ., 2020 ; Madsen et al ., 2021 ; Tremblay et al ., 2021 ).…”

“…We used ‘the integrative collaborative governance regime (CGR) model’ developed by Emerson et al ., 2011 (see Figure 1 ). It is considered a cross-disciplinary framework applied in different disciplines, such as in public administration ( Emerson et al ., 2011 ; Emerson, 2018 ), in healthcare ( Tremblay et al ., 2021 ) and in low- and middle-income countries ( Ansell and Gash, 2008 ; Emerson, 2018 ). The CGR model allows for a systemic understanding of collaborative dynamics and provides a commonly used framework applicable in the comparative empirical analysis of inter-organizational collaboration processes, internal dynamics causal pathways and performance ( Emerson, 2018 ).…”

Dimensions of Proximity: An Actionable Framework to Better Understand Integrated Practices in Cancer Networks

“…Findings suggest that the influence of network actions depends on their coherence with each other [37]. As one example, reliance on PLC participation [38] as a lever to create relational and cognitive proximity rested on several actions operating in synergy: 1) integration of PLC in national and local governance committees, 2) implementation of a community of practice bringing together PLC from across Quebec; and 3) the national framework for PLC partnership. Taken together, these deliberate actions reinforced normative integration by enabling the emergence and spread of a common view of network objectives, and shared values around personcentred care.…”