Collaborative governance in the Quebec Cancer Network: a realist evaluation of emerging mechanisms of institutionalization, multi-level governance, and value creation using a longitudinal multiple case study design

Tremblay, Dominique; Touati, Nassera; Poder, Thomas G.; Vasiliadis, Helen‐Maria; Bilodeau, Karine; Berbiche, Djamal; Denis, Jean‐Louis; Pomey, Marie‐Pascale; Hébert, Johanne; Roch, Geneviève; Prady, Catherine; Lévesque, Lise

doi:10.1186/s12913-019-4586-z

Cited by 11 publications

(24 citation statements)

References 82 publications

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“…Step 12 For Steps 5 to 7, the authors set up a multidisciplinary expert committee including a nurse researcher with expertise in cancer services research (DT) and a health economist (TGP), both of whom had prior experience with the translation of measurement instruments [41,42]. The committee also included a public health researcher with expertise in cost-benefit analysis (HMV) [43], a researcher with expertise in organizations and governance (NT) [44], and a bilingual (French and English) research assistant (LL). The committee reviewed the four versions (A, B, C, D) and produced a harmonized French language experimental Canadian P-SAFE questionnaire.…”

Section: P-safe French Version Bmentioning

confidence: 99%

Translation and Cultural Adaptation of the Patient Self-Administered Financial Effects (P-SAFE) Questionnaire to Assess the Financial Burden of Cancer in French-Speaking Patients

et al. 2020

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People living with and beyond cancer (PLC) experience financial hardship associated with the disease and its treatment. Research demonstrates that the “economic toxicity” of cancer can cause distress and impair well-being, health-related quality of life and, ultimately, survival. The Patient Self-Administered Financial Effects (P-SAFE) questionnaire was created in Canada and tested in English. The objective of this study is to describe the processes of translation and cultural adaptation of the P-SAFE for use with French speaking PLC in Canada. The Canadian P-SAFE questionnaire was translated from English to French in collaboration with the developer of the initial version, according to the 12-step process recommended by the Patient-Reported Outcome (PRO) Consortium. These steps include forward and backward translation, a multidisciplinary expert committee, and cross-cultural validation using think-aloud, probing techniques, and clarity scoring during cognitive interviewing. Translation and validation of the P-SAFE questionnaire were performed without major difficulties. Minor changes were made to better fit with the vocabulary used in the public healthcare system in Quebec. The mean score for clarity of questions was 6.4 out of a possible 7 (totally clear) Cognitive interviewing revealed that lengthy questionnaire instructions could be confusing. Our team produced a Canadian-French version of the P-SAFE. After minor rewording in the instructions, the P-SAFE questionnaire appears culturally appropriate for use with French-speaking PLC in Canada. Further testing of the French version will require evaluation of psychometric properties of validity and reliability.

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Section: P-safe French Version Bmentioning

confidence: 99%

Translation and Cultural Adaptation of the Patient Self-Administered Financial Effects (P-SAFE) Questionnaire to Assess the Financial Burden of Cancer in French-Speaking Patients

et al. 2020

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“…The coordination of complex relationships between individuals and organisations in networks is meant to enable movement from bureaucratic, siloed and rigid structures to cross-boundary learning, shared decision-making, collective capacity for action, and ultimately, care and services that are responsive to the needs of PLC (20). PLC participation in cancer network governance can be seen as part of a major shift from coordination undertaken from a unique position of authority, to a collaborative regimen (21) that fosters motivation, engagement and collective action among stakeholders with different perspectives (22).…”

Section: Conceptual Frameworkmentioning

confidence: 99%

Patient Participation in Cancer Network Governance: A Six-year Case Study

Tremblay

Touati

Usher

et al. 2020

Preprint

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Background: Patient participation in decision-making has become a hallmark of responsive healthcare systems. Cancer programs in many countries have formally committed to involving people living with and beyond cancer (PLC) at multiple levels of network-based services. However, PLC participation in the governance of these networks remains highly variable for reasons that are, as yet, poorly understood. This study explores how PLC participation takes shape within cancer network governance. Methods: This case study, using a qualitative approach in a natural setting, aimed to identify mechanisms that enable PLC participation in governance. It was conducted over six years in four local cancer networks in Québec (Canada), where PLC representation was prescribed by the Cancer Directorate. Data were collected from documents, meeting observations, and interviews with actors (n=89) involved in national and local cancer governance committees: policymakers, managers, clinicians and PLC. These data were triangulated and iteratively analysed according to a framework based on functions of collaborative governance in the network context. Results: Main mechanisms enabling PLC participation are: 1) emphasis on patient-centred care as a network objective; 2) opportunities to shape mandated PLC representation into participation; and 3) recognition of PLC knowledge 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 forum in which PLC 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 context.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 Québec are transferable to cancer networks in other jurisdictions seeking to embed PLC participation in decision-making.

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“…Translational health research networks [ 19 – 22 ] bring together several stakeholders beyond scientists who are funded to find solutions to complex problems that often span beyond the healthcare system. They aim to foster the development of health technologies (diagnostic tests, therapies, devices, procedures, care pathways, etc.)…”

Section: Introductionmentioning

confidence: 99%

Inter-individual relationships within a Canadian SPOR research network: a social network study

Lawarée

Bowen

Dogba

et al. 2022

BMC Health Serv Res

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Background Efforts have been made by health research granting agencies to bring research closer to patients’ concerns. In Canada, such efforts were formalized in 2011 with the funding of the Strategy for Patient-Oriented Research (SPOR)’s research networks to address research priorities identified by patients and accelerate the translation of research findings into patient care and health care policy. Among these networks, SPOR Diabetes Action Canada (DAC) has created patient-partner circles to facilitate their integration within the network. The nature of the relationships within this atypical patient-oriented research network is systematically explored in this paper. Methods A cross-sectional social network study was conducted among the SPOR DAC’s network members to examine inter-individual interactions, and the topics discussed the most between members. Descriptive data analyses were conducted to explore which discussion topics were discussed most among members whose primary roles were research, administration, governance, and patient representation. Results The response rate was 51.9%, providing data on 76.5% of the maximum number of connections in the network. The survey captured 2763 inter-individual relationships. Responses to a sub-question inserted in the survey show that 482 of these relationships (17,4%) existed before joining the network in collaboration on a research project. Most ties captured in the survey were yearly or quarterly, while few relationships were monthly, weekly, or daily. In measured relationships, members discussed several topics, the most frequent being scientific research, patient engagement, network coordination and governance, and operations and management. The topics associated with the most significant proportion of relationships captured in the survey were scientific research (45.4%) and patient engagement (40.7%). Management & operations and governance & coordination follow, corresponding to 24.3 and 23.9% of the captured relationships. All discussion topic subnetworks were either somewhat or highly centralized, meaning that relationships were not equally distributed among members involved in these discussions. Of the 1256 relationships involving exchanges about scientific research, 647 (51.5%) involved a researcher, 419 (33.3%) an administrator, 182 (14.5%) a patient partner, and 82 (6.5%) a member whose primary role is network governance. Conclusions Scientific research and patient engagement were the most common topics discussed, consistent with the patient-centered research at the heart of the SPOR Diabetes Action Canada network. The study identified several relationships where a patient partner has discussed scientific research with a researcher. However, relationships involving research discussions were three times more common between a researcher and an administrator than between a researcher and a patient partner, although twice as many patient partners as administrators participated in the survey. The institutionalization of patient-partner involvement in large research networks is an evolving practice for which optimal engagement methods are still being explored.

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Collaborative governance in the Quebec Cancer Network: a realist evaluation of emerging mechanisms of institutionalization, multi-level governance, and value creation using a longitudinal multiple case study design

Cited by 11 publications

References 82 publications

Translation and Cultural Adaptation of the Patient Self-Administered Financial Effects (P-SAFE) Questionnaire to Assess the Financial Burden of Cancer in French-Speaking Patients

Translation and Cultural Adaptation of the Patient Self-Administered Financial Effects (P-SAFE) Questionnaire to Assess the Financial Burden of Cancer in French-Speaking Patients

Patient Participation in Cancer Network Governance: A Six-year Case Study

Inter-individual relationships within a Canadian SPOR research network: a social network study

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