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

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.

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.

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.

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.

BACKGROUND: People 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/DESIGN: The 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.

Psychometric analysis of the TRANSIT quality indicators for cardiovascular disease prevention in primary care.

OBJECTIVE: To assess a selection of psychometric properties of the TRANSIT indicators. DESIGN: Using medical records, indicators were documented retrospectively during the 14 months preceding the end of the TRANSIT study. SETTING: Primary care in Quebec, Canada. PARTICIPANTS: Indicators were documented in a random subsample (n = 123 patients) of the TRANSIT study population (n = 759). INTERVENTIONS: For every patient, the mean compliance to all indicators of a category (subscale score) and to the complete set of indicators (overall scale score) were established. To evaluate test-retest and inter-rater reliabilities, indicators were applied twice, two months apart, by the same evaluator and independently by different evaluators, respectively. To evaluate convergent validity, correlations between TRANSIT indicators, Burge et al. indicators and Institut national d'excellence en santé et en services sociaux (INESSS) indicators were examined. MAIN OUTCOME MEASURES: Test-retest reliability, inter-rater reliability, and convergent validity. RESULTS: Test-retest reliability, as measured by intraclass correlation coefficients (ICCs) was equal to 0.99 (0.99-0.99) for the overall scale score while inter-rater reliability was equal to 0.95 (0.93-0.97) for the overall scale score. Convergent validity, as measured by Pearson's correlation coefficients, was equal to 0.77 (P < 0.001) for the overall scale score when the TRANSIT indicators were compared to Burge et al. indicators and to 0.82 (P < 0.001) for the overall scale score when the TRANSIT indicators were compared to INESSS indicators. CONCLUSIONS: Reliability was excellent except for eleven indicators while convergent validity was strong except for domains related to the management of CVD risk factors.

External facilitators and interprofessional facilitation teams: a qualitative study of their roles in supporting practice change.

BACKGROUND: Facilitation is a powerful approach to support practice change. The purpose of this study is to better understand the facilitation roles exercised by both external facilitators and interprofessional facilitation teams to foster the implementation of change. Building on Dogherty et al.'s taxonomy of facilitation activities, this study uses an organizational development lens to identify and analyze facilitation roles. It includes a concise definition of what interprofessional facilitation teams actually do, thus expanding our limited knowledge of teams that act as change agents. We also investigate the facilitation dynamics between change actors. METHODS: We carried out a qualitative analysis of a 1-year process of practice change implementation. We studied four family medicine groups, in which we constituted interprofessional facilitation teams. Each team was supported by one external facilitator and included at least one family physician, one case manager nurse, and health professionals located on or off the family medicine group's site (one pharmacist, plus at least one nutritionist, kinesiologist, or psychologist). We collected our data through focus group interviews with the four teams, individual interviews with the two external facilitators, and case audit documentation. We analyzed both predetermined (as per Dogherty et al., 2012) and emerging facilitation roles, as well as facilitation dynamics. RESULTS: A non-linear framework of facilitation roles emerged from our data, based on four fields of expertise: change management, project management, meeting management, and group/interpersonal dynamics. We identified 72 facilitation roles, grouped into two categories: "implementation-oriented" and "support-oriented." Each category was subdivided into themes (n = 6; n = 5) for clearer understanding (e.g., legitimation of change/project, management of effective meetings). Finally, an examination of facilitation dynamics revealed eight relational ties occurring within and/or between groups of actors. CONCLUSIONS: Facilitation is an approach used by appointed individuals, which teams can also foster, to build capacity and support practice change. Increased understanding of facilitation roles constitutes an asset in training practitioners such as organizational development experts, consultants, facilitators, and facilitation teams. It also helps decision makers become aware of the multiple roles and dynamics involved and the key competencies needed to recruit facilitators and members of interprofessional facilitation teams.

The prevention and management of chronic disease in primary care: recommendations from a knowledge translation meeting.

BACKGROUND: Seven chronic disease prevention and management programs were implemented across Quebec with funding support from a provincial-private industry funding initiative. Given the complexity of implementing integrated primary care chronic disease management programs, a knowledge transfer meeting was held to share experiences across programs and synthesize common challenges and success factors for implementation. METHODS: The knowledge translation meeting was held in February 2014 in Montreal, Canada. Seventy-five participants consisting of 15 clinicians, 14 researchers, 31 knowledge users, and 15 representatives from the funding agencies were broken up into groups of 10 or 11 and conducted a strengths, weaknesses, opportunities, and threats analysis on either the implementation or the evaluation of these chronic disease management programs. Results were reported back to the larger group during a plenary and recorded. Audiotapes were transcribed and summarized using pragmatic thematic analysis. RESULTS AND DISCUSSION: Strengths to leverage for the implementation of the seven programs include: (1) synergy between clinical and research teams; (2) stakeholders working together; (3) motivation of clinicians; and (4) the fact that the programs are evidence-based. Weaknesses to address include: (1) insufficient resources; (2) organizational change within the clinical sites; (3) lack of referrals from primary care physicians; and (4) lack of access to programs. Strengths to leverage for the evaluation of these programs include: (1) engagement of stakeholders and (2) sharing of knowledge between clinical sites. Weaknesses to address include: (1) lack of referrals; (2) difficulties with data collection; and (3) difficulties in identifying indicators and control groups. Opportunities for both themes include: (1) fostering new and existing partnerships and stakeholder relations; (2) seizing funding opportunities; (3) knowledge transfer; (4) supporting the transformation of professional roles; (5) expand the use of health information technology; and (6) conduct cost evaluations. Fifteen recommendations related to mobilisation of primary care physicians, support for the transformation of professional roles, and strategies aimed at facilitating the implementation and evaluation of chronic disease management programs were formulated based on the discussions at this knowledge translation event. CONCLUSION: The results from this knowledge translation day will help inform the sustainability of these seven chronic disease management programs in Quebec and the implementation and evaluation of similar programs elsewhere.

Facilitating Implementation of Interprofessional Collaborative Practices Into Primary Care: A Trilogy of Driving Forces.

Implementing interprofessional collaborative practices in primary care is challenging, and research about its facilitating factors remains scarce. The goal of this participatory action research study was to better understand the driving forces during the early stage of the implementation process of a community-driven and patient-focused program in primary care titled "TRANSforming InTerprofessional cardiovascular disease prevention in primary care" (TRANSIT). Eight primary care clinics in Quebec, Canada, agreed to participate by creating and implementing an interprofessional facilitation team (IFT). Sixty-three participants volunteered to be part of an IFT, and 759 patients agreed to participate. We randomized six clinics into a supported facilitation ("supported") group, with an external facilitator (EF) and financial incentives for participants. We assigned two clinics to an unsupported facilitation ("unsupported") group, with no EF or financial incentives. After 3 months, we held one interview for the two EFs. After 6 months, we held eight focus groups with IFT members and another interview with each EF. The analyses revealed three key forces: (1) opportunity for dialogue through the IFT, (2) active role of the EF, and (3) change implementation budgets. Decision-makers designing implementation plans for interprofessional programs should ensure that these driving forces are activated. Further research should examine how these forces affect interprofessional practices and patient outcomes.

Priority interventions to improve the management of chronic non-cancer pain in primary care: a participatory research of the ACCORD program.

PURPOSE: There is evidence that the management of chronic non-cancer pain (CNCP) in primary care is far from being optimal. A 1-day workshop was held to explore the perceptions of key actors regarding the challenges and priority interventions to improve CNCP management in primary care. METHODS: Using the Chronic Care Model as a conceptual framework, physicians (n=6), pharmacists (n=6), nurses (n=6), physiotherapists (n=6), psychologists (n=6), pain specialists (n=6), patients (n=3), family members (n=3), decision makers and managers (n=4), and pain researchers (n=7) took part in seven focus groups and five nominal groups. RESULTS: Challenges identified in focus group discussions were related to five dimensions: knowledge gap, "work in silos", lack of awareness that CNCP represents an important clinical problem, difficulties in access to health professionals and services, and patient empowerment needs. Based on the nominal group discussions, the following priority interventions were identified: interdisciplinary continuing education, interdisciplinary treatment approach, regional expert leadership, creation and definition of care paths, and patient education programs. CONCLUSION: Barriers to optimal management of CNCP in primary care are numerous. Improving its management cannot be envisioned without considering multifaceted interventions targeting several dimensions of the Chronic Care Model and focusing on both clinicians and patients.

Development of an interprofessional program for cardiovascular prevention in primary care: A participatory research approach.

BACKGROUND: The chronic care model provides a framework for improving the management of chronic diseases. Participatory research could be useful in developing a chronic care model-based program of interventions, but no one has as yet offered a description of precisely how to apply the approach. OBJECTIVES: An innovative, structured, multi-step participatory process was applied to select and develop (1) chronic care model-based interventions program to improve cardiovascular disease prevention that can be adapted to a particular regional context and (2) a set of indicators to monitor its implementation. METHODS: Primary care clinicians (n = 16), administrative staff (n = 2), patients and family members (n = 4), decision makers (n = 5), researchers, and a research coordinator (n = 7) took part in the process. Additional primary care actors (n = 26) validated the program. RESULTS: The program targets multimorbid patients at high or moderate risk of cardiovascular disease with uncontrolled hypertension, dyslipidemia or diabetes. It comprises interprofessional follow-up coordinated by case-management nurses, in which motivated patients are referred in a timely fashion to appropriate clinical and community resources. The program is supported by clinical tools and includes training in motivational interviewing. A set of 89 process and clinical indicators were defined. CONCLUSION: Through a participatory process, a contextualized interventions program to optimize cardiovascular disease prevention and a set of quality indicators to monitor its implementation were developed. Similar approach might be used to develop other health programs in primary care if program developers are open to building on community strengths and priorities.

Priorities for action to improve cardiovascular preventive care of patients with multimorbid conditions in primary care--a participatory action research project.

BACKGROUND: Cardiovascular disease (CVD) prevention in patients with multimorbid conditions is not always optimal in primary care (PC). Interactive collaborative processes involving PC community are recommended to develop new models of care and to successfully reshape clinical practices. OBJECTIVE: To identify challenges and priorities for action in PC to improve CVD prevention among patients with multimorbid conditions. METHODS: Physicians (n = 6), nurses (n = 6), community pharmacists (n = 6), other health professionals (n = 6), patients (n = 6) and family members (n = 6), decision makers (n = 6) and researchers (n = 6) took part in a 1-day workshop. Using the Chronic Care Model (CCM) as a framework, participants in focus groups and nominal groups identified the challenges and priorities for action. RESULTS: Providing appropriate support to lifestyle change in patients and implementing collaborative practices are challenging. Priorities for action relate to three CCM domains: (i) improve the clinical information system by providing computerized tools for interprofessional and interinstitutional communication, (ii) improve the organization of health care and delivery system design by enhancing interprofessional collaboration, especially with nurses and pharmacists, and creating care teams that include a case manager and (iii) improve self-management support by giving patients access to nutritionists, to personalized health care plans including lifestyle recommendations and to other resources (community resources, websites). CONCLUSIONS: To optimize CVD prevention, PC actors recommend focussing mainly on three CCM domains. Electronic medical records, collaborative practices and self-management support are perceived as pivotal aspects of successful PC prevention programme. Developing and implementing such models are challenging and will require the mobilization of the whole PC community.

Socio-ethical analysis of equity in access to nutrigenomics interventions for obesity prevention: a focus group study.

The goal of nutrigenomics is to develop nutritional interventions targeted to individual genetic make-up. Obesity is a prime candidate for nutrigenomics research. Personalized approaches to prevention of diseases associated with obesity may be available in the near future. Nevertheless, in the context of limited resources, access to a nutrigenomics personalized health service raises questions around equity. Using focus groups, the present qualitative research study provides empirical data on ethical concerns and values surrounding the nutrigenomics-guided personalized nutrition for obesity prevention. Eight focus groups were convened including 27 healthy individuals and 21 individuals who self-identified as obese or at risk of obesity. The transcripts of the focus group were analyzed according to the qualitative method of grounded theory. Responsibility, reciprocity, and solidarity emerged as the key ethical criteria perceived by the respondents to be significant in terms of how health professionals should determine access to personalized nutrition services. Still, exclusion of individuals from specific nutrigenomic services is likely to conflict with the imperatives of medical deontology and contemporary social consensus. The representation of equity in this paper is novel: it considers the intersection of nutrigenomics and personalized nutritional interventions specifically in the context of limited public resources for health services.

Integrating anticipated nutrigenomics bioscience applications with ethical aspects.

Nutrigenomics is a subspecialty of nutrition science which aims to understand how gene-diet interactions influence individuals' response to food, disease susceptibility, and population health. Yet ethical enquiry into this field is being outpaced by nutrigenomics bioscience. The ethical issues surrounding nutrigenomics face the challenges of a rapidly evolving field which bring forward the additional dimension of crossdisciplinary integrative research between social and biomedical sciences. This article outlines the emerging nutrigenomics definitions and concepts and analyzes the existing ethics literature concerning personalized nutrition and presents "points to consider" over ethical issues regarding future nutrigenomics applications. The interest in nutrigenomics coincides with a shift in emphasis in medicine and biosciences toward prevention of future disease susceptibilities rather than treatment of already established disease. Hence, unique ethical issues emerge concerning the extent to which nutrigenomics can alter our relation to food, boundaries between health and disease, and the folklore of medical practice. Nutrigenomics can result in new social values, norms, and responsibilities for both individuals and societies. Nutrigenomics is not only another new application of "-omics" technologies in the context of gene-diet interactions. Nutrigenomics may fundamentally change the way we perceive human illness while shifting the focus and broadening the scope of health interventions from patients to healthy individuals. In resource- and time-limited healthcare settings, this creates unique ethical dilemmas and distributive justice issues. Ethical aspects of nutrigenomics applications should be addressed proactively, as this new science develops and increasingly coalesces with other applications of genomics in medicine and public health.