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

BMC Health Services Research

Lise Lévesque¹  Dominique Tremblay¹  Susan Usher²  Karine Bilodeau³  Marie-Pascale Pomey⁴  Nassera Touati⁵ 

[1] Centre de recherche Charles-Le Moyne - Saguenay–Lac-Saint-Jean sur les innovations en santé, Campus de Longueuil - Université de Sherbrooke, 150 Place Charles LeMoyne - Bureau 200, J4K 0A, Longueuil, Québec, Canada;Centre de recherche Charles-Le Moyne - Saguenay–Lac-Saint-Jean sur les innovations en santé, Campus de Longueuil - Université de Sherbrooke, 150 Place Charles LeMoyne - Bureau 200, J4K 0A, Longueuil, Québec, Canada;École Nationale d’Administration Publique, 4750 ave Henri-Julien, 5e étage, H2T 3E5, Montréal, Québec, Canada;Faculty of Nursing, Université de Montréal, Pavillon Marguerite-d’Youville, local 7101, 2375 chemin de la Côte-Ste-Catherine, H3T 1A8, Montréal, Québec, Canada;School of Public Health, Université de Montréal, 7101 ave du Parc, 3e étage, bureau 3014-8, H3N 1X9, Montréal, Québec, Canada;École Nationale d’Administration Publique, 4750 ave Henri-Julien, 5e étage, H2T 3E5, Montréal, Québec, Canada;

关键词: Patient participation;    Cancer;    Networks;    Governance functions;    Collaborative governance;    Multiple case study design;    Qualitative data;   

DOI  :  10.1186/s12913-021-06834-1

来源: Springer

【 摘 要 】

BackgroundPatient 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.MethodsThis 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.ResultsWe 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.ConclusionsThis 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.

【 授权许可】

CC BY