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Introduction: With the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues. Objectives: The objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years. Methodology: We conducted a qualitative descriptive evaluation study. Nineteen interviews were conducted: six with URP members and 13 with staff representatives. The documents related to the creation of the panel, the URP minutes summarising the discussions and the reports published during that period were collected and analysed. Following a preliminary round of data analysis, a debriefing meeting was conducted with a few participants to validate the results. Results: The panel was set up as part of the INESSS' desire to better integrate experiential knowledge into its recommendations. Twelve projects were presented to the panel on various themes. The URP enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users. Panel members and INESSS professionals learned to work together, moving the working methods from consultation to collaboration and even coconstruction. Based on the panel's significant contribution, the INESSS decided to maintain it and to strengthen its place in its system to better integrate the experiential knowledge of users into its work. Conclusion: This research illustrates how AHTAASS can set up a URP composed exclusively of users, and how it can contribute and be evaluated. It shows that URPs are structures that value the sharing of experiential knowledge of its members, humanise decision‐making and give meaning to the work done by scientific professionals. Patient or Public Contribution: One patient–researcher has contributed to the preparation and writing of this manuscript. [ABSTRACT FROM AUTHOR]

Objectives: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team. [ABSTRACT FROM AUTHOR]

Background: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. Methods: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. Results: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). Conclusions: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment. [ABSTRACT FROM AUTHOR]

Introduction: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE‐Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. Methods: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. Results: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. Conclusion: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Patient or Public Contribution: Two patient–researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript. [ABSTRACT FROM AUTHOR]

Context: Partnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective: To co‐construct a tool for measuring the degree of partnership between patients and HCPs. Design: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions: The CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings. Patient or Public Contribution: Patients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article. [ABSTRACT FROM AUTHOR]

Context: The National Institute of Excellence in Health and Social Services (INESSS), which functions as the Québec health technology assessment (HTA) agency, tested a new way to engage patients along with health‐care professionals in the co‐construction of recommendations regarding implantable cardioverter‐defibrillator replacement. Objective: The objective of this article was to describe the process of co‐construction of recommendations and to propose methods of building best practices for patient involvement (PI) in HTA. Design: Throughout the process, documents were collected and participant observations were made. Individual interviews were conducted with patients, health‐care professionals and the INESSS scientific team, from January to March 2018. Results: Three committees were established: an expert patient committee to reflect on patient experience literature; an expert health professional committee to reflect on medical literature; and a co‐construction committee through which both patients and health‐care professionals contributed to develop the recommendations. The expert patients validated and contextualized a literature review produced by the scientific team. This allowed the scientists to consider aspects related to the patient experience and to integrate the feedback from patients into HTA recommendations. The most important factor contributing to a positive PI experience was the structured methodology for selecting patient participants, and a key factor that inhibited the process was a lack of training in PI on the part of the scientific team. Conclusions: This experience demonstrates that it is possible to co‐construct recommendations, even for technically complex HTA subjects, through a more democratic process than usual which led to more patient‐focused guidance. [ABSTRACT FROM AUTHOR]

Background: Around the world, many healthcare organizations engage patients as a quality improvement strategy. In Canada, the University of Montreal has developed a model which consists in partnering with patient advisors, providers, and managers in quality improvement. This model was introduced through its Partners in Care Programs tested with several quality improvement teams in Quebec, Canada. Partnering with patients in quality improvement brings about new challenges for healthcare managers. This model is recent, and little is known about how managers contribute to implementing and sustaining it using key practices.Methods: In-depth multi-level case studies were conducted within two healthcare organizations which have implemented a Partners in Care Program in quality improvement. The longitudinal design of this research enabled us to monitor the implementation of patient partnership initiatives from 2015 to 2017. In total, 38 interviews were carried out with managers at different levels (top-level, mid-level, and front-line) involved in the implementation of Partners in Care Programs. Additionally, seven focus groups were conducted with patients and providers.Results: Our findings show that managers are engaged in four main types of practices: 1-designing the patient partnership approach so that it makes sense to the entire organization; 2-structuring patient partnership to support its deployment and sustainability; 3-managing patient advisor integration in quality improvement to avoid tokenistic involvement; 4-evaluating patient advisor integration to support continuous improvement. Designing and structuring patient partnership are based on typical management practices used to implement change initiatives in healthcare organizations, whereas managing and evaluating patient advisor integration require new daily practices from managers. Our results reveal that managers at all levels, from top to front-line, are concerned with the implementation of patient partnership in quality improvement.Conclusion: This research adds empirical support to the evidence regarding daily managerial practices used for implementing patient partnership initiatives in quality improvement and contributes to guiding healthcare organizations and managers when integrating such approaches. [ABSTRACT FROM AUTHOR]

Context: Working with women to best meet their needs has always been central to midwifery in Quebec, Canada. The creation of birthing centres at the end of the 1990s consolidated this desire to prioritize women's involvement in perinatal care and was intended to encourage the establishment of a care and services partnership between care providers and users. The aim of this pilot study is to evaluate the perceptions of clients, midwives and birth assistants of the way in which women are involved in partnership working in Quebec birthing centres. Methods: A single qualitative case and pilot study was conducted with midwives (n = 5), birth assistants (n = 4), a manager (n = 1), clients (n = 5) and members of the users' committee (n = 2) at a birthing centre in Quebec, Canada in July and August 2023. The partnership was evaluated using the dimensions of a validated CADICEE questionnaire. Results: The women and professionals stressed that the relationship was established in a climate of trust. The caregivers also attached importance to autonomy, information sharing and decision-making, adaptation to context, empathy and recognition of the couple's expertise. The women confirmed that they establish a relationship of trust with the professionals when the latter show empathy and that they adapt the follow-up to their knowledge and life context. Key factors in establishing this kind of care relationship are the time given, a de-medicalized environment, the comprehensive care received, and professionals who are well-informed about the partnership. In addition, the birthing centre has a users' committee that can put forward ideas but has no decision-making powers. Conclusions: Both the women and the professionals at the birthing centre appear to be working in partnership. However, at the organizational level, the women are not involved in decision-making. A study of all birthing centres in Quebec would provide a more comprehensive picture of the situation. [ABSTRACT FROM AUTHOR]

Objective: There is a need for structure to achieve functional patient engagement within mental healthcare organizations, and for clarification on how to proceed on a strategic level. The aim of this paper is to shed light on the implementation of a strategic organizational structure for patient engagement in mental health by examining why and how to implement a structure, the organizational and environmental factors that facilitate or limit the process, and the perceived consequences of the implementation. Method: This paper evaluates the implementation of a strategic committee for patient engagement in a mental healthcare organization in Montreal (Quebec, Canada). The research was designed as a qualitative single case study using a deductive approach by means of a conceptual framework. Data sources consisted in ten semi-structured interviews, three focus groups, and organizational documents. Results: The strategic committee for patient engagement was implemented as a means to formalize patient partner participation, following the introduction of a vision of full citizenship. Important aspects of its implementation included its composition and role, the elaboration of a framework for patient partner participation, and finally, ongoing application and evaluation of the framework. Several facilitating factors were identified, including executive management support, leadership, and a vision behind the participation. Limiting factors mainly consisted of resistance towards patient participation and the existence of stigma. Consequences included increased and improved patient engagement, as well as reduced stigma within the organization. Conclusion: This study shows that the implementation of a strategic organizational structure for patient engagement is comprehensive. It further shows the importance of a vision and an articulate leadership involving several actors. Further research is needed regarding the impact of this type of strategic structure on a clinical level. [ABSTRACT FROM AUTHOR]

Background: In Canada, long waiting times for core specialized services have consistently been identified as a key barrier to access. Governments and organizations have responded with strategies for better access management, notably for total joint replacement (TJR) of the hip and knee. While wait time management strategies (WTMS) are promising, the factors which influence their sustainable implementation at the organizational level are understudied. Consequently, this study examined organizational and systemic factors that made it possible to sustain waiting times for TJR within federally established limits and for at least 18 months or more.Methods: The research design is a multiple case study of WTMS implementation. Five cases were selected across five Canadian provinces. Three success levels were pre-defined: 1) the WTMS maintained compliance with requirements for more than 18 months; 2) the WTMS met requirements for 18 months but could not sustain the level thereafter; 3) the WTMS never met requirements. For each case, we collected documents and interviewed key informants. We analyzed systemic and organizational factors, with particular attention to governance and leadership, culture, resources, methods, and tools.Results: We found that successful organizations had specific characteristics: 1) management of the whole care continuum, 2) strong clinical leadership; 3) dedicated committees to coordinate and sustain strategy; 4) a culture based on trust and innovation. All strategies led to relatively similar unintended consequences. The main negative consequence was an initial increase in waiting times for TJR and the main positive consequence was operational enhancement of other areas of specialization based on the TJR model.Conclusions: This study highlights important differences in factors which help to achieve and sustain waiting times. To be sustainable, a WTMS needs to generate greater synergies between contextual-level strategy (provincial or regional) and organizational objectives and constraints. Managers at the organizational level should be vigilant with regard to unintended consequences that a WTMS in one area can have for other areas of care. A more systemic approach to sustainability can help avoid or mitigate undesirable unintended consequences. [ABSTRACT FROM AUTHOR]

In 2005 the Supreme Court of Canada issued a landmark ruling in the debate on privatization of Quebec's health care system. The Quebec government subsequently made several decisions, such as lifting the ban on private insurance for some health services already offered in the public system. We interviewed 42 stakeholders who were involved in the decision process between 1999 and 2008 and analyzed their views. We identified three types of positions on privatization, based on two key factors raised in these encounters: (a) the ideological and political inertia of both civil society and the state and (b) the concerted action of stakeholders. [ABSTRACT FROM AUTHOR]

To advocate for patients to be more actively involved with the healthcare services they receive, particularly patients living with chronic illness, the Faculty of Medicine of the University of Montreal and its affiliated hospitals developed the Patients as Partners concept where the patient is considered a full-fledged partner of the health care delivery team and the patient’s experiential knowledge is recognized. This study aims to show how patients view their engagement with healthcare professionals regarding their direct care. Using theoretical sampling, 16 semi-structured interviews were conducted with patients with chronic illness who were familiar with the concept of Patients as Partners. Data analysis followed a constructivist grounded theory approach. Patients describe themselves as proactively engaging in three types of practice, regardless of health professionals’ openness to their role as partners. The first is a process of continuous learning that allows them to acquire experiential knowledge about their health, as well as scientific information and technical know-how. The second involves their assessment of the healthcare they receive, in terms of its quality and how it aligns with their personal preferences. It includes their assessment of the quality of their relationship with the health professional and of the latter’s scientific knowledge and technical know-how. The third type, adaptation practices, builds on patients’ learning and assessments to compensate for and adapt to what has been perceived as optimal or non-optimal health or healthcare circumstances. Patients appear to play a more active and less docile role in their own direct care than suggested so far in the literature, regardless of the degree of reciprocity of the partnership or the degree to which the health professional seeks to encourage patient engagement. [ABSTRACT FROM AUTHOR]

Background: Long waits for core specialized services have consistently been identified as a key barrier to access. Governments and organizations at all levels have responded with strategies for better wait list management. While these initiatives are promising, insufficient attention has been paid to factors influencing the implementation and sustainability of wait time management strategies (WTMS) implemented at the organizational level. Methods: A systematic review was conducted using the main electronic databases, such as CINAHL, MEDLINE, and Cochrane Database of Systematic Reviews, to identify articles published between 1990 and 2011 on WTMS for scheduled care implemented at the organizational level or higher and on frameworks for analyzing factors influencing their success. Data was extracted on governance, culture, resources, and tools. We organized a workshop with Canadian healthcare policy-makers and managers to compare our initial findings with their experience. Results: Our systematic review included 47 articles: 36 related to implementation and 11 to sustainability. From these, we identified a variety of WTMS initiated at the organizational level or higher, and within these, certain factors that were specific to either implementation or sustainability and others common to both. The main common factors influencing success at the contextual level were stakeholder engagement and strong funding, and at the organizational level, physician involvement, human resources capacity, and information management systems. Specific factors for successful implementation at the contextual level were consultation with front-line actors and common standards and guidelines, and at the organizational level, financial incentives and dedicated staffing. For sustainability, we found no new factors. The workshop participants identified the same major factors as found in the articles and added others, such as information sharing between physicians and managers. Conclusions: Factors related to implementation were studied more than those related to sustainability. However, this finding was useful in developing a tool to help managers at the local level monitor the implementation of WTMS and highlighted the need for more research on specific factors for sustainability and to assess the unintended consequences of introducing WTMS in healthcare organizations. [ABSTRACT FROM AUTHOR]

Background: Cardiovascular diseases are the leading cause of death and disability worldwide. Little is known about the organizational priorities of patients and clinicians involved in primary cardiovascular care. This study aimed to identify their shared top priorities and explore on which aspects their perspectives differed. Methods: A three-round modified online Delphi study was carried out with patients and clinicians in seven academic primary care settings from metropolitan, suburban and small-town areas in Quebec, Canada. Patient partners experienced in the mobilization of their experiential knowledge also participated in the study. Following an "open" round, the items elicited were assessed by a combined rating and ranking approach. Items achieving an initial consensus level ≥70% were reassessed and then rank-ordered based on their final scores. Levels of consensus achieved among patients and clinicians were compared using Fisher's Exact tests. Results: Thirty panelists completed the study (9 clinic patients, 7 patient partners and 14 clinicians). Out of 41 organizational aspects generated, six top priorities were shared by patients and clinicians. These related to listening and tailoring care to each patient, provision of personalized information, rapid response in the event of a problem, keeping professional training up-to-date, and relational and informational continuity of care. Statistically significant differences were found between patients' and clinicians' perspectives regarding the importance of offering healthy lifestyle and prevention activities at the clinic (lower for patients), timely access to the treating physician (higher for patients), and effective collaboration with specialist physicians (higher for patients). Conclusion: Although their views differ on some organizational aspects, patients and clinicians share a small set of top priorities for primary cardiovascular care that may be transferable to other chronic diseases. These top priorities should remain a central focus of clinical settings, alongside other primary care reform goals. [ABSTRACT FROM AUTHOR]

Globally, the mix of private- and public-sector involvement in health care delivery is a focus of political concern. This concern in Canada takes place within the parameters of the federal Canada Health Act. Private for-profit activities in the health care sector in Canadian provinces have moderately shrunk the definition of ‘necessary medical and hospital services’ that must be provided by the public administration system under the federal Canada Health Act. In this article, we argue that the development of new technologies, pharmaceutical innovations, competing (non-health) demands on the federal dollar, and an aging population together create an environment where pressures for economic and political sustainability have led to some erosion of necessary health services in the provinces. Such pressures have, in turn, led to the growth of private commercial-sector health services. Within Canada’s federal system, provincial negotiation of the role of commercial health care organizations has developed in different ways in Ontario and Quebec. Such subnational developments are a significant focus for comparative health policy analysis. [ABSTRACT FROM PUBLISHER]

This article focuses on Quebec's most recent reform in the regionalization of health care to understand why the government chose to transform the regional boards into agencies. This case study used interviews and documentary analysis. Rooted in a political science perspective, the conceptual framework is inspired by the work of John and draws on the four variables that influence the choice of policy: ideas, interests, institutions and events. Results of the case study suggest that Quebec's Commission of Study for Health and Social Services (the Clair Commission) in 2000 and the 2002 pre-electoral environment put the issue on the agenda. In 2003, the newly elected Liberal government passed Bill 25 - An Act Respecting Local Health and Social Services Network Development Agencies, which represented a political compromise: originally slated for eradication, the regional tier survived but in a new form. The element that sparked reform was the change in government following the elections. Different inquiry reports spread the reform's ideas, while interest groups articulated contrasting visions on the transformation. Above all, regional institutions showed great resilience in the face of change. From a historical perspective, this regionalization policy is a step backward: the regional tier is now stronger from a managerial and technocratic point of view, but it is politically and democratically weakened. This suggests a government intention, at that time, to maintain the regional level as a means of retaining centralized control over Quebec's health-care system. [ABSTRACT FROM AUTHOR]

Background: One way to improve quality and safety in healthcare organizations (HCOs) is through accreditation. Accreditation is a rigorous external evaluation process that comprises self-assessment against a given set of standards, an on-site survey followed by a report with or without recommendations, and the award or refusal of accreditation status. This study evaluates how the accreditation process helps introduce organizational changes that enhance the quality and safety of care.Methods: We used an embedded multiple case study design to explore organizational characteristics and identify changes linked to the accreditation process. We employed a theoretical framework to analyze various elements and for each case, we interviewed top managers, conducted focus groups with staff directly involved in the accreditation process, and analyzed self-assessment reports, accreditation reports and other case-related documents.Results: The context in which accreditation took place, including the organizational context, influenced the type of change dynamics that occurred in HCOs. Furthermore, while accreditation itself was not necessarily the element that initiated change, the accreditation process was a highly effective tool for (i) accelerating integration and stimulating a spirit of cooperation in newly merged HCOs; (ii) helping to introduce continuous quality improvement programs to newly accredited or not-yet-accredited organizations; (iii) creating new leadership for quality improvement initiatives; (iv) increasing social capital by giving staff the opportunity to develop relationships; and (v) fostering links between HCOs and other stakeholders. The study also found that HCOs' motivation to introduce accreditation-related changes dwindled over time.Conclusions: We conclude that the accreditation process is an effective leitmotiv for the introduction of change but is nonetheless subject to a learning cycle and a learning curve. Institutions invest greatly to conform to the first accreditation visit and reap the greatest benefits in the next three accreditation cycles (3 to 10 years after initial accreditation). After 10 years, however, institutions begin to find accreditation less challenging. To maximize the benefits of the accreditation process, HCOs and accrediting bodies must seek ways to take full advantage of each stage of the accreditation process over time. [ABSTRACT FROM AUTHOR]

In January 1997, the government of Quebec, Canada, implemented a public/private prescription drug program that covered the entire population of the province. Under this program, the public sector collaborates with private insurers to protect all Quebecers from the high cost of drugs. This article outlines the principal features and history of the Quebec plan and draws parallels between the factors that led to its emergence and those that led to the passage of the Medicare Prescription Drug, Improvement and Modernization Act (MMA) in the United States. It also discusses the challenges and similarities of both programs and analyzes Quebec's ten years of experience to identify adjustments that may help U.S. policymakers optimize the MMA. [ABSTRACT FROM AUTHOR]

Background: Effective interventions prepare patients for making values-sensitive health decisions by helping them become informed and clarifying their values for each of the options. However, patient decision support interventions have not been widely implemented and little is known about effective models for delivering them to patients. The purpose of this study was to describe call centre nurses' adoption of a decision support protocol into practice following exposure to an implementation intervention and to identify factors influencing sustainable nursing practice changes. Methods: Exploratory case study at a Canadian province-wide call centre guided by the Ottawa Model of Research Use. Data sources included a survey of nurses who participated in an implementation intervention (n = 31), 2 focus groups with nurses, interviews with 4 administrators, and a document review. Results: Twenty-five of 31 nurses responded to the survey measuring adoption of decision support in practice. Of the 25 nurses, 11 had used the decision support protocol in their practice within one month of the intervention. Twenty-two of the 25 intended to use it within the next three months. Although some nurses found it challenging to begin using the protocol, most nurses reported that it: a) helped them recognize callers needing decision support; b) changed their approach to handling these calls; and c) was a positive enhancement to their practice. Strategies identified to promote sustainability of practice changes included integration of the decision support protocol in the call centre database, streamlining the patient decision aids for easier use via telephone, clarifying the administrative direction for the call centre's program, creating a call length guideline specific for these calls, incorporating decision support training in the staff development plan, and informing the public of this enhanced service. Conclusion: Although most nurses adopted the decision support protocol for coaching callers facing values-sensitive decisions, to sustain practice changes, interventions are required to manage barriers in the practice environment and integrate decision support into the organization's policies, resources, and routine activities. [ABSTRACT FROM AUTHOR]

Background: Dermatology consultations in Québec, Canada, face accessibility challenges, with most dermatologists concentrated in urban areas. Teledermatology, offering remote diagnosis and treatment, holds promise in overcoming these limitations. However, concerns regarding patient-doctor relationships and logistical issues exist. Objectives: This article aims to introduce a dermatology patient learning pathway (PLP) developed by the Centre of Excellence on Partnership with Patients and the Public (CEPPP), focusing on knowledge, abilities, and skills mobilized by patients and their loved ones at key moments of the life course with an illness, as well as emerging educational needs. Methods: The PLP development was co-developed with dermatology patient and caregiver partners, stakeholders, and the CEPPP team. The process encompassed stakeholder engagement, exploration, recruitment of patient and caregiver partners, co-development of the PLP draft, and validation through consensus building. Results: The PLP methodology led to the creation of 44 learning objectives, comprising a total of 107 subobjectives. These objectives were organized into 8 phases of the patient life course with a dermatological condition: (1) prevention and predisposition; (2) discovery, self-examination, or observation of a change; (3) first consultation; (4) wandering; (5) consultation with a dermatologist; (6) diagnosis; (7) treatments; and (8) living with it. Conclusions: The dermatology PLP serves as a resource outlining patient competency across different stages of managing a dermatological condition throughout their life course. In the context of teledermatology, the PLP might facilitate patient and caregiver engagement by helping select appropriate information and tools to support active participation in care. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. Methods: An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. Discussion: This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. Systematic review registration: PROSPERO CRD42023421845. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to describe the use of patient partnership, as defined by the Montreal Model, in emergency departments (EDs) in France and report the perception of patient partnership from both the practitioner and patient perspectives. Methods: This cross-sectional study was conducted between July 2020 and October 2020. First, a survey was sent to 146 heads of EDs in both teaching hospitals and non-teaching hospitals in France to assess the current practices in terms of patient partnership in service organization, research, and teaching. The perceived barriers and facilitators of the implementation of such an approach were also recorded. Then, semi-structured telephone interviews were carried out with patients involved in a service re-organization project. Results: A total of 48 answers (response rate 32.9%) to the survey were received; 33.3% of respondents involved patients in projects relating to service re-organization, 20.8% involved patients in teaching projects, and 4.2% in research projects. Overall, 60.4% of the respondents were willing to involve patients in re-organization or teaching projects. The main barriers mentioned for establishing patient partnership were difficulties regarding patient recruitment and lack of time. The main advantages mentioned were the improvement in patient/caregiver relationship and new ideas to improve healthcare. When interviewed, patients mentioned the desire to improve healthcare and the necessity to involve people with different profiles and backgrounds. A too important personal commitment was the most frequently raised barrier to their engagement. All the patients recognized their positive role, and more generally, the positive role of patient engagement in service re-organization. Conclusion: Although this preliminary study indicates a rather positive perception of patient partnership among heads of EDs in France and partner patients, this approach is still not widely applied in practice. [ABSTRACT FROM AUTHOR]

Contexte/problématique : La Faculté de médecine de l'Université de Montréal et tous les hôpitaux affiliés au réseau intégré de santé de l'Université de Montréal participent actuellement au développement d'une nouvelle approche de la relation soignant-patient basée sur le concept de patient partenaire. La reconnaissance du statut de soignant chez chaque patient -et donc le développement de sa compétence de soins - est au cœur de ce virage important. Objectifs/questions : Sonder les représentations des patients au regard de leur rôle possible au sein des équipes de soins et des compétences qu'ils jugeraient nécessaires de développer pour mieux s'intégrer dans les équipes de soins et prendre des décisions libres et éclairées. Nous explorerons explicitement les résistances ou préoccupations que les patients pourront avoir à l'égard de la perspective du patient-partenaire, mais aussi les possibilités nouvelles qu'ils y associent. Méthodes : Approche inductive et exploratoire, méthode de théorisation ancrée. Entrevues individuelles de 2 heures réalisées en 2013 avec 20 patients atteints depuis plus de 5 ans d'une des 7 maladies chroniques suivantes : hémophilie, insuffisance rénale, VIH, diabète, asthme, santé mentale, toxicomanie. Nous leur avons explicitement demandé s'ils veulent d'un partenariat de soins, s'ils jugent que c'est à leur avantage, s'ils se sentent outillés pour devenir membres de l'équipe de soins et s'ils y voient des inconvénients. Toutes les entrevues ont été enregistrées, retranscrites et analysée à l'aide du logiciel N'Vivo. Résultats : Pour les patients interviewés, le partenariat permet de reconnaître une expérience et une expertise qu'ils ont acquises au cours des années de vie avec la maladie. Ils désirent tous avoir une plus grande place dans leur processus de soins. Certaines craintes ont été manifestées, principalement en ce qui a trait à la confiance qu'ils ont en leur compétence de soignants. Ils veulent être accompagnés dans le développement de leur compétence de soins. Discussion/conclusion : Le partenariat est un virage important et prometteur. Toutefois le rôle du patient dans un tel partenariat ne peut être défini unilatéralement par les professionnels de la santé. Cette étude permet de comprendre que bien qu'ils soient favorables à ce concept, les patients interrogés souhaitent que nos universités et nos établissements de santé deviennent des milieux de formation non seulement pour les futurs professionnels de la santé, mais aussi pour les patients. [ABSTRACT FROM AUTHOR]

Background: Long waits for core specialized services have consistently been identified as a key barrier to access. Governments and organizations at all levels have responded with strategies for better wait list management. While these initiatives are promising, insufficient attention has been paid to factors influencing the implementation and sustainability of wait time management strategies (WTMS) implemented at the organizational level.Methods: A systematic review was conducted using the main electronic databases, such as CINAHL, MEDLINE, and Cochrane Database of Systematic Reviews, to identify articles published between 1990 and 2011 on WTMS for scheduled care implemented at the organizational level or higher and on frameworks for analyzing factors influencing their success. Data was extracted on governance, culture, resources, and tools. We organized a workshop with Canadian healthcare policy-makers and managers to compare our initial findings with their experience.Results: Our systematic review included 47 articles: 36 related to implementation and 11 to sustainability. From these, we identified a variety of WTMS initiated at the organizational level or higher, and within these, certain factors that were specific to either implementation or sustainability and others common to both. The main common factors influencing success at the contextual level were stakeholder engagement and strong funding, and at the organizational level, physician involvement, human resources capacity, and information management systems. Specific factors for successful implementation at the contextual level were consultation with front-line actors and common standards and guidelines, and at the organizational level, financial incentives and dedicated staffing. For sustainability, we found no new factors. The workshop participants identified the same major factors as found in the articles and added others, such as information sharing between physicians and managers.Conclusions: Factors related to implementation were studied more than those related to sustainability. However, this finding was useful in developing a tool to help managers at the local level monitor the implementation of WTMS and highlighted the need for more research on specific factors for sustainability and to assess the unintended consequences of introducing WTMS in healthcare organizations. [ABSTRACT FROM AUTHOR]

Aims: Compare the self-reported prevalence of severe hypoglycemia (level-3-H) in people with type 1 diabetes (PWT1D) according to two wording of definition: by the International Hypoglycemia Study Group (IHSG) and an alternate simplified version developed by patient-partners (PP). Methods: Cross-sectional study (PWT1D > = 14 years) self-reporting risk factors, patient-year incidence and annual prevalence of level-3-H were defined according to either IHSG's wording (low sugar levels requiring help from another person, or use of glucagon, or hospitalization, or loss of consciousness) or with an alternative simpler wording developed by PP (low sugar levels that you would have been unable to treat). Results: Among 1430 eligible participants, in the last 12 months, the annual prevalence of level-3-H (IHSG: 242/100 vs. PP: 231/100 patient-years, p = 0.229) and median number of episodes (IHSG: 2.0 [1–3] vs. PP: 1.0 [1–3], p = 0.359) were similar. The prevalence of participants reporting hypoglycemia in the past year was higher with IHSG wording (13.5% vs. 10.5%; p < 0.001); this difference was significantly (p < 0.001) larger among patients with impaired awareness of hypoglycemia. Association of both definitions with level-3-H risk factors was comparable. Conclusions: The level-3-H episodes by PP and IHSG wording were comparable. The simplicity of PP wording may allow better mutual understanding between patients and healthcare team. Trial registration: NCT03720197 (registered on October 19th 2018). [ABSTRACT FROM AUTHOR]

In recent years, recognizing patients' experiential knowledge to improve the quality of care has resulted in the participation of patient advisors at various levels of healthcare systems. Some who are working at the clinical level are called accompanying patients (AP). A PRISMA-ScR exploratory scoping review of the literature was conducted on articles published from 2005 to 2021. Articles not in English or French and grey literature were excluded. The databases searched included Medline, PubMed, Scopus, and Google Scholar. The data were organized according to the similarities in the ethical foundations of the included papers. Out of 2095 identified papers, 8 met inclusion criteria. Terms used to describe APs included peer support, resource parent, and peer health mediator. The clinical settings included psychiatry/mental health and neonatology. APs, patients, healthcare professionals, managers and policy makers were included in the studies. Three personal ethical foundations describing the foundations of the AP role were found: resilience, listening skills and altruism. The ethical foundations of this role also addressed interpersonal and interprofessional relationships with other actors in the healthcare system. The literature on the ethical foundations of APs is sparse, with heterogeneous methodologies. Further studies mobilizing well-defined methodologies would further validate the current results and deepen our understanding of the ethical foundations of the AP role. [ABSTRACT FROM AUTHOR]

Background: Cancer is a leading cause of disease burden worldwide and the first cause of mortality in Canada with 30.2% of deaths attributable to cancer. Given aging of the population and the improvement of prevention and treatment protocols, the number of cancer survivors is steadily increasing. These individuals have unique physical and mental health needs some of which can be addressed by integrating physical activity promotion into ongoing and long-term care. Despite the benefits of being active, delivery of PA programs for cancer patients in both clinical and community settings remains challenging. This knowledge-to-action protocol–called Kiné-Onco–aims to develop a practice guideline for the delivery, implementation, and scaling-up of cancer-specific physical activity promotion programs and services in clinical and community settings located in Québec, Canada. Method: The Kiné-Onco project involves knowledge synthesis of scientific and grey literature to establish the benefits and added value of physical activity for cancer patients and survivors, describes current practices in delivering physical activity programs, analyses quantitative data from electronic health records (EHR) of patients participating in a novel hospital-based physical activity program, collects and analyses qualitative data from patients and healthcare providers interviews about lived experience, facilitators, and barriers to physical activity promotion, outlines deliberative workshops among multidisciplinary team members to develop implementation guidelines for physical activity promotion, and summarizes a variety of knowledge transfer and exchange activities to disseminate the practice guidelines. Discussion: This paper describes the protocol for a knowledge-to-action project aimed at producing and sharing actionable evidence. Our aim is that physical activity promotion programs and services be scaled up in such a way as to successfully integrate physical activity promotion throughout cancer treatment and survivorship in order to improve the physical and mental health of the growing population of individuals having received a cancer diagnosis. [ABSTRACT FROM AUTHOR]

Context: During the COVID-19 pandemic, restrictions were imposed on visits in hospitals in the province of Quebec, Canada in an effort to reduce the risk of viral exposure by minimizing face-to-face contact in order to protect patients, visitors and staff. These measures led to social isolation for patients. In order to reduce this isolation, CHUM (the Centre hospitalier de l'Université de Montréal, a teaching hospital) shifted from in-person visits to courtesy telephone calls delivered by volunteers from CHUM's Volunteers, Recreation and Leisure Department. Objectives: To study: (1) the contribution made by these calls to reducing isolation and their limitations, (2) how the calls can be improved, and (3) whether they should be maintained, based on the views of patients and volunteers. Methodology: This study examined two populations. The first one consisted of 189 adult patients hospitalized at CHUM who received a courtesy phone call from a volunteer and the second one consisted of the 25 CHUM volunteers who made these calls. Quantitative data were collected from patients and volunteers through questionnaires and a Smartsheet. The patient questionnaire evaluated isolation, the courtesy phone calls, the relationship of trust with the volunteer and sociodemographic questions. The volunteer questionnaire evaluated the appropriateness of the technology for the intervention, the support and training received, the impacts of the courtesy phone call on both the patients and the volunteers, an experience report and sociodemographic information. In addition, a focus group was held with 7 volunteers. Then the verbatim were transcribed and analyzed using QDA miner software. Results: From April 27, 2020 to September 5, 2020 more than 11,800 calls were made, mainly concerning hospitalization conditions or home follow-ups (n = 83), and relationships with relatives, friends, and family (n = 79). For 73.6% of hospitalized patients, the courtesy calls from volunteers were a good response to their needs, and 72% of volunteers agreed. 64.5% of patients felt less isolated and 40% of volunteers felt useful. Conclusion: Our data suggest that patients felt less isolated during their hospitalization because of the courtesy calls made by the volunteers, that smartphones could also be used for video calls and, finally, that maintaining this type of service seems as relevant after as during a pandemic to provide social interactions to people isolated for medical reasons. [ABSTRACT FROM AUTHOR]

Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021. Of 959 respondents, 43% had downloaded the app. Messaging from government sources constituted the largest influence on app download. Infrequent social contacts and perceived app inefficacy were the main reasons not to download the app. Cybersecurity, data confidentiality, loss of privacy, and geolocation were the most frequent concerns. Nearly half of the respondents inaccurately believed that the app used geolocation. Most respondents supported citizen involvement in app development. The identified predictors for app uptake included nine characteristics. In conclusion, this project highlights four key themes on how to promote the social acceptability of such tools: (1) improved communication and explanation of key app characteristics, (2) design features that incentivize adoption, (3) inclusive socio-technical features, and (4) upstream public partnership in development and deployment. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic created an urgent need to act to reduce the spread of the virus and alleviate congestion in healthcare services, protect health professionals, and help them maintain satisfactory quality and safety of care. Remote monitoring platforms (RPM) emerged as potential solutions. In this study, we evaluate, from health professionals' perspectives, the capacity and contribution of two different digital platforms to maintain quality, safety, and patient engagement in care. A cross-sectional study was conducted using a survey in which a total of 491 health professionals participated. The results show that, in general, user perceptions of the quality and safety of care provided through the platforms were positive. The ease of access to health professionals' services in general and shorter waiting times for patients were the two main features that were highly appreciated by most participants. However, some problems were encountered during the use of these two platforms, such as a lack of training and/or direct support for users. To improve the two platforms and maximize their use, the areas for improvement and the issues identified should be addressed as part of a collaborative process involving health professionals and patients as well as health system leaders, decision-makers, and digital platform providers. [ABSTRACT FROM AUTHOR]

Background: Social inequalities in complications associated with diabetes mellitus persist. As a primary care sensitive condition (PCSC), this association could be related to differential access to primary care. Our objectives are to establish a typology of care trajectories following a new diagnosis, and to explore social determinants of trajectories.Methods: We used the TorSaDe (The Care Trajectories-Enriched Data) cohort, which links Canadian Community Health Survey respondents to health administrative data. Care trajectories were mapped over a two-year period following a new diagnosis and analysed using state sequence and clustering methods. Associations between individual and geographic characteristics with trajectory types were assessed with multinomial logistic regression.Results: Three trajectories were identified: Regular Family Physician (FP) Predominant, Specialist Physician Predominant, and Few Services. With Regular FP as the reference, males had higher odds of experiencing the Few Services trajectory, higher education was associated with higher odds of both the Few Services and the Specialist trajectories, and immigrants had higher odds of the Specialist trajectory. Diagnoses in a physician's office, as opposed to in hospital, were associated with higher odds of the Regular FP trajectory.Conclusions: The Regular FP trajectory most closely aligns with the management principles of the PCSC approach. We did not find strong evidence of social status privileging access to this trajectory. However, the association with location of diagnosis suggests that efforts to ensure patients diagnosed in hospital are well linked to a regular family physician for follow up may help to reduce unnecessary specialist use and meet PCSC goals. [ABSTRACT FROM AUTHOR]

Background: Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care. Objective: Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care. Search Strategy: A scoping review of recent peer‐reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL‐EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient‐centredness, empowerment, shared decision‐making and partnership in care. Main Results: Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision‐making and patient‐centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient‐centredness, empowerment and shared decision‐making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase. Discussion and Conclusion: There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time. Patient and Public Contribution: This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background: Despite the critical role of nursing care in determining high-performing healthcare delivery, performance science in this area is still at an early stage of development and nursing's contribution most often remains invisible to policy-makers and managers. The objectives of this study were: 1) to develop a theoretically based framework to conceptualize nursing care performance; 2) to analyze how the different components of the framework have been operationalized in the literature; and 3) to develop a pool of indicators sensitive to various aspects of nursing care that can be used as a basis for designing a performance measurement system. Methods: We carried out a systematic review of published literature across three databases (MEDLINE, EMBASE and CINAHL), focusing on literature between 1990 and 2008. Screening of 2,103 papers resulted in final selection of 101 papers. A detailed template was used to extract the data. For the analysis, we used the method of interpretive synthesis, focusing first on 31 papers with theoretical or conceptual frameworks; the remaining 70 articles were used to strengthen and consolidate the findings. Results: Current conceptualizations of nursing care performance mostly reflect a system perspective that builds on system theory, Donabedian's earlier works on healthcare organization, and Parsons' theory of social action. Drawing on these foundational works and the evidence collated, the Nursing Care Performance Framework (NCPF) we developed conceptualizes nursing care performance as resulting from three nursing subsystems that operate together to achieve three key functions: (1) acquiring, deploying and maintaining nursing resources, (2) transforming nursing resources into nursing services, and (3) producing changes in patients' conditions. Based on the literature review, these three functions are operationalized through 14 dimensions that cover 51 variables. The NCPF not only specifies core aspects of nursing performance, it also provides decision-makers with a conceptual tool to serve as a common ground from which to define performance, devise a common and balanced set of performance indicators for a given sector of nursing care, and derive benchmarks for this sector. Conclusions: The NCPF provides a comprehensive, integrated and theoretically based model that allows performance evaluation of both the overall nursing system and its subsystems. Such an approach widens the view of nursing performance to embrace a multidimensional perspective that encompasses the diverse aspects of nursing care. [ABSTRACT FROM AUTHOR]

Background: Patient safety is a worldwide problem, and the patient contribution to mitigate the risk of patient harm is now recognized as a cornerstone to its solution. In order to understand the nature of integrating patients into patient safety and healthcare organizations and to monitor their integration, a Canadian survey tool has been co-constructed by patients, researchers and the Canadian Patient Safety Institute (CPSI). This questionnaire has been adapted from the French version of the patient engagement (PE) in patient safety (PS) questionnaire created for the province of Quebec, Canada.Methodology: The pan-Canadian PE in PS survey tool was developed in a five-step process: (1) a literature review and revision of the initial tool developed in the province of Quebec; (2) translation of the French questionnaire into an English version tool; (3) creation of a Canadian expert advisory group; (4) adaptation of the English version tool based on feedback from the expert advisory group (assessment and development of the construct's dimensions, wording assessment and adaptation for pan-Canadian use, technical testing of the online platform for the survey); and (5) pilot testing and pre-validation of the tool before pan-Canadian use.Results and Conclusion: Eight pan-Canadian PE in PS surveys were completed from five Canadian provinces by the expert advisory group and six surveys were completed during the pilot project by participants from different provinces in Canada. This survey tool comprises 5 sections: (1) demographic identification of the participants (Q1 to Q5); (2) general questions (Q6 to Q17); (3) the patient engagement process (experience level of participants and organizational incentives for PE in general) (Q18 to Q33); (4) PE in PS processes, such as current activities, strategies, structures, resources and factors (Q34 to Q67); and (5) the context and impact of PE in PS initiatives in Canadian healthcare organizations (CHOs) (Q68 to Q75), including outcome identification, improvement mechanisms and strategies, evaluation mechanisms, and indicators. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

To identify and describe challenges that contribute to experiential learning among cancer survivors across different age groups. Qualitative collaborative study 27 cancer survivors Participants were invited to explain the after-cancer challenges they learned from during six focus groups. Five were organized by age-group (15-18, 19-34, 35-44, 45-59, ≥ 60) and a mixed group was held to ensure the co-construction of findings with participants. Inductive content analysis was performed. While learning to live with a chronic disease, participant's experiential learning appeared through four challenges: Searching for one's identity, Autonomy, Disruption of social roles and responsibilities, Reclaiming one's life. Particular aspects of challenges were identified across ages-groups and life courses. Results indicate that psychosocial and health professionals should be sensitive to the fact that life courses are now diverse and not always associated with biological age. This has the potential to improve care by informing how these challenges affect the experience of cancer survivorship over time. [ABSTRACT FROM AUTHOR]

Background: Chronic conditions such as diabetes and chronic obstructive pulmonary disease (COPD) are common and burdensome diseases primarily managed in primary care. Yet, evidence points to suboptimal quality of care for these conditions in primary care settings. Quality improvement collaboratives (QICs) are organized, multifaceted interventions that can be effective in improving chronic disease care processes and outcomes. In Quebec, Canada, the Institut national d'excellence en santé et en services sociaux (INESSS) has developed a large-scale QIC province-wide program called COMPAS+ that aims to improve the prevention and management of chronic diseases in primary care. This paper describes the protocol for our study, which aims to evaluate implementation and impact of COMPAS+ QICs on the prevention and management of targeted chronic diseases like diabetes and COPD. Methods: This is a mixed-methods, integrated knowledge translation study. The quantitative component involves a controlled interrupted time series involving nine large integrated health centres in the province. Study sites will receive one of two interventions: the multifaceted COMPAS+ intervention (experimental condition) or a feedback only intervention (control condition). For the qualitative component, a multiple case study approach will be used to achieve an in-depth understanding of individual, team, organizational and contextual factors influencing implementation and effectiveness of the COMPAS+ QICs. Discussion: COMPAS+ is a QI program that is unique in Canada due to its integration within the governance of the Quebec healthcare system and its capacity to reach many primary care providers and people living with chronic diseases across the province. We anticipate that this study will address several important gaps in knowledge related to large-scale QIC projects and generate strong and useful evidence (e.g., on leadership, organizational capacity, patient involvement, and implementation) having the potential to influence the design and optimisation of future QICs in Canada and internationally. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Decision aids help patients make total joint arthroplasty decisions, but presurgical evaluation might influence the effects of a decision aid. We compared the effects of a decision aid among patients considering total knee arthroplasty at 2 surgical screening clinics with different evaluation processes.Methods: We performed a subgroup analysis of a randomized controlled trial. Patients were recruited from 2 surgical screening clinics: an academic clinic providing 20-minute physician consultations and a community clinic providing 45-minute physiotherapist/nurse consultations with education. We compared the effects of decision quality, decisional conflict and surgery rate using Cochran-Mantel-Haenszel χ2 tests and the Breslow-Day test.Results: We evaluated 242 patients: 123 from the academic clinic (61 who used the decision aid and 62 controls) and 119 from the community clinic (59 who used the decision aid and 60 controls). Results suggested a between-site difference in the effect of the decision aid on the patients' decision quality (p = 0.09): at the academic site, patients who used the decision were more likely to make better-quality decisions than controls (54% v. 35%, p = 0.044), but not at the community site (47% v. 51%, p = 0.71). Fewer patients who used decision aids at the academic site than at the community site experienced decisional conflict (p = 0.007) (33% v. 52%, p = 0.05 at the academic site and 40% v. 24%, p = 0.08 at the community site). The effect of the decision aid on surgery rates did not differ between sites (p = 0.65).Conclusion: The decision aid had a greater effect at the academic site than at the community site, which provided longer consultations with more verbal education. Hence, decision aids might be of greater value when more extensive total knee arthroplasty presurgical assessment and counselling are either impractical or unavailable. [ABSTRACT FROM AUTHOR]

Background: Intermittent Auscultation (IA) is the recommended method of fetal surveillance for healthy women in labour. However, the majority of women receive continuous electronic monitoring. We used the Theoretical Domains Framework (TDF) to explore the views of Birthing Unit nurses about using IA as their primary method of fetal surveillance for healthy women in labour.Methods: Using a semi-structured interview guide, we interviewed a convenience sample of birthing unit nurses throughout Ontario, Canada to elicit their views about fetal surveillance. Interviews were recorded and transcribed verbatim. Transcripts were content analysed using the TDF and themes were framed as belief statements. Domains potentially key to changing fetal surveillance behaviour and informing intervention design were identified by noting the frequencies of beliefs, content, and their reported influence on the use of IA.Results: We interviewed 12 birthing unit nurses. Seven of the 12 TDF domains were perceived to be key to changing birthing unit nurses' behaviour The nurses reported that competing tasks, time constraints and the necessity to multitask often limit their ability to perform IA (domains Beliefs about capabilities; Environmental context and resources). Some nurses noted the decision to use IA was something that they consciously thought about with every patient while others stated it their default decision as long as there were no risk factors (Memory, attention and decision processes, Nature of behaviour). They identified positive consequences (e.g. avoid unnecessary interventions, mother-centered care) and negative consequences of using IA (e.g. legal concerns) and reported that the negative consequences can often outweigh positive consequences (Beliefs about consequences). Some reported that hospital policies and varying support from care teams inhibited their use of IA (Social influences), and that support from the entire team and hospital management would likely increase their use (Social influences; Behavioural regulation).Conclusion: We identified potential influences on birthing unit nurses' use of IA as their primary method of fetal surveillance. These beliefs suggest potential targets for behaviour change interventions to promote IA use. [ABSTRACT FROM AUTHOR]

To increase the donor pool, the strategy of transplantation from 'marginal' donors was developed though patients' preferences about these donors were insufficiently known. The preferences of patients registered on the waiting list or already transplanted in eight transplant teams covering four main organs (i.e., kidney, liver, heart, and lung) were evaluated using the discrete choice experiment method. In each left during 2 days, patients were interviewed on four scenarios. Of 178 eligible patients, 167 were interviewed; 40% accepted marginal graft in their own situation and 89% at least in one of the scenarios. Imagining urgent situations or rare profiles with difficult access to transplantation, respectively, 86% and 71% accepted these grafts. Most (76%) preferred to be informed about these grafts and 43% preferred to be involved in decision. The emergency [ OR = 1.24; 95% CI: (1.06-1.45)] and the hazardousness [ OR = 0.88; 95% CI: (0.78-0.99)] of the transplantation were factors independently associated with marginal graft acceptance. Most patients preferred to be informed and to be involved in the decision. Marginal grafts could be more accepted by patients in critical medical situations or perceiving their situation as critical. Physicians' practices in transplantation should be reconsidered taking into account individual preferences. This study was performed in a single country and thus reflects the cultural bias and practice thereof. [ABSTRACT FROM AUTHOR]

Objective As rates of total joint arthroplasty (TJA) for osteoarthritis (OA) rise, there is a need to ensure appropriate use. We undertook this study to develop criteria for appropriate use of TJA. Methods In prior work, we used qualitative methods to separately assess OA patients' and arthroplasty surgeons' perceptions regarding appropriateness of patient candidates for TJA. The current study reviewed the appropriateness themes that emerged from each group, and a series of statements were developed to reflect each unique theme or criterion. A group of arthroplasty surgeons then indicated their level of agreement with each statement using electronic voting. Where ≤70% agreed or disagreed, the criterion was discussed and revised, and revoting occurred. In standardized telephone interviews, OA patient focus group participants indicated their level of agreement with each revised criterion. Results Qualitative research in 58 OA patients and 14 arthroplasty surgeons identified 11 appropriateness criteria. Member-checking in 15 surgeons (including 5 who had participated in the qualitative study) resulted in agreement on 6 revised criteria. These included evidence of arthritis on joint examination, patient-reported symptoms negatively impacting quality of life, an adequate trial of appropriate nonsurgical treatment, realistic patient expectations of surgery, mental and physical readiness of patient for surgery, and patient-surgeon agreement that potential benefits exceed risks. Thirty-six of the original 58 OA patient focus group participants (62.1%) participated in the member-check interviews and endorsed all 6 criteria. Conclusion Patients and surgeons jointly endorsed 6 criteria for assessment of TJA appropriateness in OA patients. Prospective validation of these criteria (assessed preoperatively) as predictive of postoperative patient-reported outcomes is under way and will inform development of a surgeon-patient decision-support tool for assessment of TJA appropriateness. [ABSTRACT FROM AUTHOR]

Background To evaluate feasibility and potential effectiveness of a patient decision aid (PtDA) for patients and a preference report for surgeons to reduce wait times and improve decision quality in patients with osteoarthritis considering total knee replacement. Methods A prospective two-arm pilot randomized controlled trial. Patients with osteoarthritis were eligible if they understood English and were referred for surgical consultation about an initial total knee arthroplasty at a Canadian orthopaedic joint assessment clinic. Patients were randomized to the PtDA intervention or usual education. The intervention was an osteoarthritis PtDA for patients and a one-page preference report summarizing patients’ clinical and decisional data for their surgeon. The main feasibility outcomes were rates of recruitment and questionnaire completion; the preliminary effectiveness outcomes were wait times and decision quality. Results Of 180 patients eligible for surgical consultation, 142 (79%) were recruited and randomized to the PtDA intervention (n = 71) or usual education (n = 71). Data collection yielded a 93% questionnaire completion rate with less than 1% missing items. After one year, 13% of patients remained on the surgical wait list. The median time from referral to being off the wait list (censored using survival analysis techniques) was 33.4 weeks for the PtDA group (n = 69, 95% CI: 26.0, 41.4) and 33.0 weeks for usual education (n = 71, 95% CI: 26.1, 39.9). Patients exposed to the PtDA had higher decision quality based on knowledge (71% versus 47%; p < 0.0001) and quality decision being an informed choice that is consistent with their values for option outcomes (56.4% versus 25.0%; p < 0.001). Conclusions Recruitment of patients with osteoarthritis considering surgery and data collection were feasible. As some patients remained on the surgical waiting list after one year, follow-up should be extended to two years. Patients exposed to the PtDA achieved higher decision quality compared to those receiving usual education but there was no difference in wait for surgery. Trials registration ClinicalTrials.Gov NCT00743951 [ABSTRACT FROM AUTHOR]

We evaluated the effect of an intervention on call centre nurses' knowledge of decision support and skills in coaching callers facing value-sensitive health decisions. Forty-one registered nurses at a health call centre were randomly assigned to an intervention or control group. The intervention was a coaching protocol, online tutorial, skills building workshop and performance feedback. The main outcome measures were: knowledge test; blinded quality assessment of coaching skills during simulated calls and call duration. Compared with controls, nurses in the intervention group had better knowledge (74 versus 60%, P = 0.007) and decision coaching skills (81 versus 44%, P < 0.001), particularly in assessing decisional needs (information, values clarity, support, stage and timing of decision) and addressing support issues. Call duration did not differ (18.5 versus 16.7 min, P = 0.73). The coaching protocol was rated as compatible with nurses' views on decision-making and more advantageous compared with their usual practices. The intervention improved the quality of nurses' decision coaching without affecting call duration. [ABSTRACT FROM AUTHOR]

Simple Summary: We recently developed an oncogenetic model to overcome the unprecedented demand for genetic counseling and testing for hereditary breast and ovarian cancer. Quality and performance indicators showed that the implementation of this model improved access to genetic counseling and minimized delays for genetic tests for patients, who reported to be overwhelmingly satisfied with the process. However, it remains unknown whether this model is robust and sustainable or requires adjustments. In addition, whether the model could be deployed elsewhere remains also to be elucidated. The C-MOnGene study was therefore designed to gain an in-depth understanding of the context in which the model was developed and implemented, and document the lessons that can be learned to optimize oncogenetic services delivery in other settings. 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. [ABSTRACT FROM AUTHOR]

Background: To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services.Methods: We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients' experiences of being engaged.Results: Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign-discrete products largely derived from low-level engagement (consultative unidirectional feedback)-whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients' experiences of the engagement process (n = 12; 25%). While most experiences were positive-increased self-esteem, feeling empowered, or independent-some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made.Conclusions: Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients' experiences of the engagement process and whether these outcomes translate into improved quality of care.Registration: N/A (data extraction completed prior to registration on PROSPERO). [ABSTRACT FROM AUTHOR]

Background: To evaluate feasibility and potential effectiveness of a patient decision aid (PtDA) for patients and a preference report for surgeons to reduce wait times and improve decision quality in patients with osteoarthritis considering total knee replacement.Methods: A prospective two-arm pilot randomized controlled trial. Patients with osteoarthritis were eligible if they understood English and were referred for surgical consultation about an initial total knee arthroplasty at a Canadian orthopaedic joint assessment clinic. Patients were randomized to the PtDA intervention or usual education. The intervention was an osteoarthritis PtDA for patients and a one-page preference report summarizing patients' clinical and decisional data for their surgeon. The main feasibility outcomes were rates of recruitment and questionnaire completion; the preliminary effectiveness outcomes were wait times and decision quality.Results: Of 180 patients eligible for surgical consultation, 142 (79%) were recruited and randomized to the PtDA intervention (n = 71) or usual education (n = 71). Data collection yielded a 93% questionnaire completion rate with less than 1% missing items. After one year, 13% of patients remained on the surgical wait list. The median time from referral to being off the wait list (censored using survival analysis techniques) was 33.4 weeks for the PtDA group (n = 69, 95% CI: 26.0, 41.4) and 33.0 weeks for usual education (n = 71, 95% CI: 26.1, 39.9). Patients exposed to the PtDA had higher decision quality based on knowledge (71% versus 47%; p < 0.0001) and quality decision being an informed choice that is consistent with their values for option outcomes (56.4% versus 25.0%; p < 0.001).Conclusions: Recruitment of patients with osteoarthritis considering surgery and data collection were feasible. As some patients remained on the surgical waiting list after one year, follow-up should be extended to two years. Patients exposed to the PtDA achieved higher decision quality compared to those receiving usual education but there was no difference in wait for surgery.Trials Registration: ClinicalTrials.Gov NCT00743951. [ABSTRACT FROM AUTHOR]