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Abstract Background The COVID-19 pandemic necessitated the rapid availability of evidence to respond in a timely manner to the needs of practice settings and decision-makers in health and social services. Now that the pandemic is over, it is time to put in place actions to improve the capacity of systems to meet knowledge needs in a situation of crisis. The main objective of this project was thus to develop an action plan for the rapid syntheses of evidence in times of health crisis in Quebec (Canada). Methods We conducted a three-phase collaborative research project. First, we carried out a survey with producers and users of rapid evidence syntheses (n = 40) and a group interview with three patient partners to prioritize courses of action. In parallel, we performed a systematic mapping of the literature to identify rapid evidence synthesis initiatives developed during the pandemic. The results of these two phases were used in a third phase, in which we organized a deliberative workshop with 26 producers and users of rapid evidence syntheses to identifying strategies to operationalize priorities. The data collected at each phase were compared to identify common courses of action and integrated to develop an action plan. Results A total of 14 specific actions structured into four main axes were identified over the three phases. In axis 1, actions on raising awareness of the importance of evidence-informed decision-making among stakeholders in the health and social services network are presented. Axis 2 includes actions to promote optimal collaboration of key stakeholders in the production of rapid evidence synthesis to support decision-making. Actions advocating the use of a variety of rapid evidence synthesis methodologies known to be effective in supporting decision-making are presented in axis 3. Finally, axis 4 is about actions on the use of effective knowledge translation strategies to promote the use of rapid evidence synthesis products to support decision-making. Conclusions This project led to the development of a collective action plan aimed at preparing the Quebec ecosystem and other similar jurisdictions to meet knowledge needs more effectively in times of health emergency. The implementation of this plan and its evaluation will enable us to continue to fine-tune it.

ABSTRACT Introduction The Chronic Care Model (CCM), the Expanded Chronic Care Model (ECCM) and the eHealth Enhanced Chronic Care Model (eCCM) focus on how healthcare teams and eHealth support can offer effective care and relevant solutions for patients facing chronic care conditions. However, they do not consider how patients can help these teams in their work, nor do they promote ways in which patients can help themselves. However, in the last decade, three different models have emerged that can complete our capacity to design and deliver integrated care for people with chronic diseases. In this article, we propose a revised version of the model that integrates the patient perspective and patients' experience‐based knowledge. It integrates three different ways of engaging patients that complement the other patient engagement point of view: the experience of care and mediation in healthcare, therapeutic patient education and patient learning pathways, as well as patient–professional partnership. Methodology For each of the three models, we conducted a review of the literature using CINAHL, Medline, OVID, EMBASE PsychINFO, Science Direct and government reports on patient engagement and partnership with their healthcare providers, to integrate the different components of these models into the ECCM and eCCM. The goal is to create a model that better takes into account the experiential knowledge of patients and citizens throughout its different dimensions. Results We identified 129 papers based on their framework, design, sample, measures and fit with patient engagement and chronic illness and added our own research when relevant. Integrating the three models provides an opportunity to amplify the role played by the patient perspective in the management of chronic disease. The Expanded Chronic Care Patient–Professional Partnership Model (E2C3PM) is intended to rebalance power relations between healthcare professionals and patients (and their caregivers). This new model is based on recognizing patients' experiential knowledge and their roles as caregivers and as full members of the care team. Integrating patient empowerment into the E2C3PM underscores the importance of coproduction care with patients at the clinical, organizational and system levels within a supportive environment. Conclusion Applying this new model should make it possible to better take into account the complexity of chronic diseases, improving the integration not only of care, services and eHealth support but also the various determinants of health and reaching a mutually beneficial settlement among all actors involved. Patient or Public Contribution A patient‐researcher contributed to the development of the protocol, the data collection and the preparation and writing of this manuscript.

Background: Telemonitoring for COVID-19 has gained much attention due to its potential in reducing morbidity, healthcare utilization, and costs. However, its benefit with regard to economic outcomes has yet to be clearly demonstrated. Objective: To analyze the costs associated with the use of the Opal portal to monitor COVID-19 patients during their 14-day confinement in Quebec and compare them to those of non-users of any home telemonitoring technology. Methods: A cost analysis was conducted through a cross-sectional study between COVID-19 patients who used (PU) the Opal platform during their 14-day confinement at home and those who did not use (PNU) any home remote monitoring technology. Data was collected between June 2021 to April 2022. An individual interview with each participant using an adapted questionnaire was conducted by telephone or online using a teleconferencing platform. A micro-costing approach was undertaken using a dual patient and Quebec’s health-care system perspective. Results: 27 telemonitoring participants, 29 non-users, 8 clinicians, and 4 managers were included. Telemonitoring reduced the average total costs incurred by PU by 82% ($537.3CAD) between PU ($117.2CAD) and PNU ($654.5CAD). Telemonitoring enrollees used healthcare less intensely with fewer emergency room visits (1 PU compared to 6 PNU), which translated to an average savings of $253.3CAD per patient. Conclusion: This is the first study to demonstrate that telemonitoring through the Opal platform is a viable strategy to reduce healthcare costs and utilization for patients and the healthcare system. The evidence provides strong support for introducing telemonitoring as a component of case management.

This study aims to assess family doctors' perceived needs for improved patient follow-up post-acute treatment in oncology departments, specifically focusing on the Patient Oriented Discharge Summary (PODS) for individuals living with cancer. A cross-sectional quantitative survey targeted family doctors, and a before/after exploratory study was conducted with patients to measure their needs pre- and post-PODS implementation. Twenty-one out of 42 family doctors participated in the survey (50%). Patient data was collected at three points in time: prior to PODS implementation (T1, n = 20/30; 77%), one month later (T2, n = 20/26; 77%), and six months later (T3, n = 21/28; 75%). Descriptive statistics were used for all inquiries. Results revealed that 52.24% of family doctors lacked information from oncology teams about patient treatments and their progress, while 90.48% received no guidance on monitoring patients for symptoms or necessary tests once treatment was completed, despite everyone expressing the desire to perform such monitoring. Family doctors recommended using standardized sheets with patient information (47%), details of side effects (41%), and post-treatment follow-up plans (12%). At T1, 60% of patients received the necessary information, at T2 95% and 81% at T3. Regarding instructions provided to family caregivers, satisfaction levels were 40% at T1, 90% at T2, and 62% at T3. The study underscores the imperative of enhancing communication between oncology specialists and family physicians, facilitating the latter's follow-up of patients completing acute treatment. It also highlights the need for patients to be adequately prepared for the transition through effective use and sustained use of PODS.

Abstract 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 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.

This article is an overview and reflection of the findings of an evaluative study conducted on a program called “Techno-Covid Partnership” (TCP) implemented in April 2020 at the Centre Hospitalier de l’Université de Montréal (CHUM) in Montreal, Canada. In the context of the COVID-19 pandemic, the CHUM decided in April 2020 to implement telehealth, virtual care, and telemonitoring platforms and technologies to maintain access to care and reduce the risks of contamination and spread of COVID-19 as well as to protect users of health services and health professionals. Three technological platforms for telehealth and remote care and monitoring have been developed, implemented, and evaluated in real-time within the framework of the TCP program. A cross-sectional study was carried out in which a questionnaire was used and administered to users of telehealth platforms including patients and healthcare professionals. The methods and results of the study have been published previously published. In the completion of the two articles published in this context, in this paper, we briefly recall the context of the study and the method performed. The main focus of the paper is on presenting a critical overview and reflection on the major findings of our evaluation of the use of telehealth platforms from the point of view of patients and health professionals and discuss certain paradoxes i.e., the advantages, challenges, recommendations, and other perspectives that emerged in this study.

Abstract 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.

Background: Amidst the acceleration of digital health deployment in the province of Québec, the need to clarify the role of patients and caregivers was deemed essential to guide the deployment of telehealth strategies. A patient learning pathway (PLP) approach to patient and caregiver engagement was developed, containing knowledge, abilities, and skills mobilized by patients and caregivers at key moments of the life course with an illness, as well as emerging educational needs. Objective: The objective of the current paper is to present the innovative PLP approach to patient and caregiver engagement in telehealth by applying it to three medical specialties within the context of the Québec healthcare system: dermatology, oncology, and mental health/psychiatry. Methods: The PLP methodology is constituted of five chronological phases: 1) identification and engagement of main stakeholders; 2) exploration; 3) recruitment of patient and caregiver partners; 4) co-development of PLP first draft; and 5) validation and consensus building regarding competencies. Results: Three PLPs (dermatology, oncology, and mental health/psychiatry) have already been mapped using this participatory approach, showing that the proposed PLP approach to patient and caregiver engagement in telehealth is feasible. Conclusions: Mapping patient and caregiver competencies organized throughout patients' life course with an illness can lead to a highly operationalizable tool, which relevant stakeholders can use in a way that promotes patient self-management, shared decision-making, and empowerment. Innovation: The five-step PLP methodology developed proposes an innovative and structured approach to partnership with patients and caregivers in telehealth by outlining their roles throughout their life course with an illness.

Abstract 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.

BackgroundIndividuals with serious mental illness face challenges in managing their health, leading to the need for integrating their needs and preferences in care decisions. One way to enhance collaboration between users and providers is to improve clinical governance; a shared responsibility between managers and providers, supported by healthcare organizations (HCOs), policies, and standards. We applied the concept of clinical governance to understand (1) how managers and providers can enhance the involvement of users in mental health, (2) the contextual and organizational factors that facilitate user involvement in care, and (3) the users’ perceptions of their involvement in care. MethodsWe conducted two, in-depth case studies from two clinical teams in Canada offering outpatient care for users with acute mental illness. A total of 25 interviews were carried out with managers, and four focus groups were held with providers. A measure of patient-reported experience was used to evaluate the users’ perceptions of their involvement in care. ResultsThe providers used two methods to involve users in the care planning process: encouraging users to identify their life goals and supporting them to define recovery-oriented objectives. To encourage the adoption of collaborative practices, the managers used various practices such as revising care protocols, strengthening providers’ knowledge of best practices and integrating peer-support workers (PSWs) in the team. Compliance with organizational and external commitments/requirements for user involvement, access to specific training and the institutionalization of a culture promoting user involvement facilitated the adoption of collaborative practices. We found that mental health teams that adopt recovery and collaborative practices with users show a high degree of user-perceived involvement in care. ConclusionThis is the first study to apply the concept of clinical governance to understand how managerial and clinical practices, and other organizational and contextual factors, can enhance the involvement of mental healthcare users.

Abstract 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 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 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.

Patient engagement in primary care has been the focus of many studies; however, little research has evaluated its added value to organisational management in an academic community-based primary care practice (ACBPCP). In 2017, managers of an ACBPCP in Montreal, Canada, decided to integrate patients into the organization’s management committee to enhance the quality and relevance of decision-making for clinical services, education and research. Objectives were to 1) assess patients’ role and influence on an ACBPCP management committee’s decision-making process; 2) identify the facilitators of and obstacles to patient involvement in this context; and 3) evaluate the impact of this innovative approach in promoting a patient partnership culture throughout the organization. Using a single case study, qualitative and quantitative data was collected between June 2017 and May 2019 from three levels: 1) professionals in charge of patient partnership working within the territorial health care organization’s quality division; 2) management committee; and 3) ACBPCP’s staff outside the committee. Successful patient governance relies on a structured engagement approach, including a rigorous recruitment process, joined training and coaching of all committee members and the development of work modalities that facilitate co-construction. Multilevel leadership is also fundamental to support a partnership culture throughout the organisation. The results of this study illustrate opportunities and challenges related to patient involvement at an ACBPCP’s organizational level. They can guide other community-based primary care practices interested in involving patients in their management activities. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

Background: The COVID-19 pandemic created an urgent need to act to reduce the spread of the virus and alleviate congestion from healthcare services, protect healthcare providers, and help them maintain satisfactory quality and safety of care. Remote COVID-19 monitoring platforms emerged as potential solutions.Objective: The purpose of this study was to evaluate the capacity and contribution of two different platforms used to remotely monitor patients with COVID-19 to maintain quality, safety, and patient engagement in care, as well as their acceptability, usefulness, and user-friendliness from the user's perspective. The first platform is focused on telecare phone calls (Telecare-Covid), and the second is a telemonitoring app (CareSimple-Covid).Methods: We performed a cross-sectional study. The data were collected through a phone survey from May to August 2020. Data were analyzed using descriptive statistics and t-test analysis. Participants' responses and comments on open-ended questions were analyzed using content analysis to identify certain issues and challenges and potential avenues for improving the platforms.Results: Fifty one patients participated in the study. Eighteen participants used the CareSimple-Covid platform and 33 participants used the Telecare-Covid platform. Overall, the satisfaction rate for quality and safety of care for the two platforms was 80%. Over 88% of the users on each platform considered the platforms' services to be engaging, useful, user-friendly, and appropriate to their needs. The survey identified a few significant differences in users' perceptions of each platform: empathy toward users and the quality and safety of the care received were rated significantly higher on the CareSimple-Covid platform than on the Telecare-Covid platform. Users appreciated four aspects of these telehealth approaches: (1) the ease of access to services and the availability of care team members; (2) the user-friendliness of the platforms; (3) the continuity of care provided, and (4) the wide range of services delivered. Users identified some technical limitations and raised certain issues, such as the importance of maintaining human contact, data security, and confidentiality. Improvement suggestions include promoting access to connected devices; enhancing communications between institutions, healthcare users, and the public on confidentiality and personal data protection standards; and integrating a participatory approach to telehealth platform development and deployment efforts.Conclusion: This study provides preliminary evidence that the two remote monitoring platforms are well-received by users, with very few significant differences between them concerning users' experiences and views. This type of program could be considered for use in a post-pandemic era and for other post-hospitalization clienteles. To maximize efficiency, the areas for improvement and the issues identified should be addressed with a patient-centered approach.

Abstract 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 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 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.

Partnership in care and patient engagement is an expanding approach and tremendously promising for improving the quality of healthcare services. However, the approach could be subject to many issues and challenges of various kinds. In this paper, we develop a reflection of the challenges and issues that the approach of patient engagement and partnership in care is facing. After a brief presentation of certain key concepts of partnership in care and patient engagement, we discuss in this paper the most worthy of consideration issues that we identified and classified as follows: Political, Financial, Organizational, Clinical, and Ethical Issues. We then conclude the paper with certain recommendations that may help to better deal with those challenges and issues and alleviate their impacts. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

In 1999, the Institute of Medicine had already warned that medical errors caused between 44,000 and 98,000 avoidable deaths per year in the United States. A similar situation was subsequently in 2000, documented in Canadian hospitals. According to a Canadian Patient Safety Institute report (2016), incidents in both acute and home care settings resulted in additional costs of $2.75 billion each year. Research suggests that Patient Engagement (PE) for Patient Safety (PS) can help address this issue. However, the use of PE in various strategies to promote PS has yet to be fully integrated across healthcare systems in OECD countries. The aim of this study was to develop a tool for managers to assess PE strategies implemented at a health system level to enhance PS. Developing the tool involved 3 phases: (1) creating a framework; (2) building a first version of the tool; (3) validating the tool by an expert committee of PS and PE managers. The final tool consists of 81 questions, divided into four sections: (1) describing the healthcare organization (n=14); (2) gathering general information on PE strategies (n=15); (3) assessing different PE strategies for PS (n=49); and (4) describing the respondent’s involvement in PS committees (n=3). The tool is currently being used (by healthcare professionals working in Risk Management (RM) or PS, or, by task groups that include patients) in a research study in Canada and France, to assist healthcare managers in monitoring the evolution of PE for PS at a system level. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

Patient involvement is a priority for healthcare organizations seeking to improve the quality of care and services. The contribution that complaint handling can make towards quality improvement has remained underexplored, while healthcare organizations are implementing strategies to effectively involve patients in quality improvement. We conducted a qualitative study to understand how complaint managers see their roles and limitations in enhancing patient involvement in quality improvement. A convenience sample of eleven complaint managers was selected from nine Canadian healthcare organizations with various annual volumes of complaints and situated in different settings (urban, rural, and semi-urban). The data were analyzed using a hybrid deductive-inductive approach with QDA Miner. The complaint managers saw themselves as having multiple roles that enhanced patient involvement in quality improvement: ensuring mediations with patients and clinical teams, monitoring improvements following a complaint, and informing the quality improvement and operations teams about the patients’ experiences. The complaint managers also reported limitations in their roles, such as the need to respect confidentiality that excluded patients from decisions about improvements and their hierarchical independence in the organization that kept them away from continuous quality improvement activities. Interestingly, the participants reported using new, promising practices that helped integrate, both retrospectively and proactively, the patients’ perspectives on quality improvement. Complaint handling can be effective, though it is a seldom-used gateway for integrating the patient’s voice in quality improvement. Several challenges need to be addressed to make complaint handling a more substantial element in the strategies for involving patients in healthcare organizations. Experience Framework This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens.

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In addition to the barriers documented in the literature, such as patients’ poor knowledge of their disease, developmental immaturity and low level of independence, our analysis found that adolescents appear to be quite indifferent to their disease and to the transition. Once they are in an adult health centre, they develop an awareness of the disease’s impact on their lives and would appreciate having support from a peer. In contrast, parents experience considerable anxiety before this transition, and would like to be in contact with other parents. Professionals, for their part, are open to the idea of establishing a peer support program to fill certain gaps in how transfers are organized. One way to improve the transition, as suggested by our respondents, is to set up a peer support program that should evolve over time, being initially implemented for the parents and then for the young adults. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens.

Abstract 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. Conclusion 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.

During the past decade, France has experienced two major reforms in remuneration models for general practitioners who work outside public healthcare organizations: Remuneration for Public Health Objectives (Rémunération sur Objectifs de Santé Publique—ROSP) and Experiments with New Models of Remuneration (Expérimentations desNouveaux Modes de Rémunération—ENMR). These two initiatives introduced payments based on performance in the areas of quality of care, organization of services and multidisciplinary practice. In the first model, individual physicians receive incentives for preventive practices, use of generics and improvements in work organization. In the second model, incentives are provided to multi-professional practice groups to foster interdisciplinary collaboration and patient involvement. While French general practitioners accustomed to fee-for-service remuneration were at first reluctant to accept a mixed remuneration model, they eventually came to embrace it. The ROSP has significantly improved targeted areas of practice, although it has had less impact on preventive practices than on use of generics and work organization. The ENMR has helped formalize inter-professional relationships in primary care and has thus contributed to team integration. These "experiments" suggest that a deliberate distinction between changes to individual physician payment and changes to how multi-professional practice groups are paid and practice may be a good starting point when introducing financial incentives to enable benefits and avoid negative consequences.

Despite the call from the World Health Organization for more active involvement from patients in the prevention of health care-related risks, there is still insufficient evidence about how patients can be more proactive in the safety of their own care. This study helps understand the perspective of patients as partners regarding their roles, as well as their relatively untapped potential in detecting and limiting adverse events (AEs) for patient safety. 17 patients-as-partners were interviewed on five themes: 1) Behavior of patients/relatives for avoiding AEs; 2) Competencies sought in patients/relatives to play an active role in patient safety; 3) Factors limiting or facilitating the role of patients in the safety of their own care; 4) The Partnership in Care approach as a way of limiting the occurrence of AEs. Patients-as-partners revealed several key behaviours that helped patients avoid AEs: proactivity; communication; trust; vigilance; reporting and flagging; being accompanied by relatives, being accompanied by health professionals. Furthermore, several competencies helped as well: being curious, observant, responsible, able to trust, respectful, and diplomatic. Finally, factors facilitating and limiting patient engagement in safety included personal characteristics, information, interpersonal relations, and organisational aspects. Through the Partnership in Care approach, patients-as-partners develop behaviours and competencies which are yet to be directly applied to improve patient safety. However, obstacles remain: the engagement and official training of patients-as-partners and their appropriate roles in safety, including the identification of AEs; and finally, the redefinition of AEs so as to include the patients’ point of view and experiences.

Patient involvement at the operational (clinical care and services), tactical (management), and strategic (board of directors and executive management) levels of establishments is increasingly sought after. To address this specific challenge, a Canadian healthcare organization, the Centre intégré universitaire de santé et de services sociaux de la Mauricie-et-du-Centre-du-Québec, has developed an integrated strategy based on three principles: (1) shared leadership between a patient and a manager to build the strategy; (2) a clear process for recruiting, training, and coaching patient advisors (PA) so that they can participate in decision-making at the various levels of governance of the establishment; and (3) a feedback process for improving the strategy over time. This initiative gave rise to a pool of 30 patient advisors who reviewed documentation (39.07%), presented testimonies to establishment practitioners (13.73%), participated in process improvement activities (12.97%) and committees (8.93%), and helped train students in health sciences (11.61%). It also led to the development of a request form for all persons wishing to involve PAs in their projects. This PA involvement, highly appreciated by both managers (94%) and PAs (81%), brought back the fundamental meaning of the patient–practitioner relationship and helped incorporate patients’ experiential knowledge into the care and service improvement process. This strategy can serve as a model for other organizations wishing to structure optimal patient engagement at the different levels of governance of their organization.

This paper presents an innovative model of care, which brings patients who have already been through a similar experience of illness (patient advisors) directly to the bedside of patients, where they are viewed as full-fledged members of the clinical team. As part of a pilot project, three patient advisors were recruited and met with patients who had sustained a traumatic amputation and were admitted to the only center of expertise in replantation of the upper limb in Canada. Several individual interviews and focus groups with patients and patient advisors have revealed very promising results. Indeed, patients have expressed tremendous appreciation for their meetings and interactions with patient advisors. They have stated feeling less isolated, having a better morale and increased hopefulness regarding the outcome of the care pathway. Patient advisors also felt a positive impact of their involvement. A larger study needs to be conducted to determine the impact of this model of care on patient adherence to treatment and on members of the health care team.

This research focuses on the perception of patients who participated in Continuous Quality Improvement Committees (CIC) regarding their contribution, lessons learned, and challenges encountered. The committees are engaged in a care partnership approach where patients are recognized for their experiential knowledge and treated as full members of the clinical team. Based on patient interviews, we conclude that they bring a structured and thoughtful vision of their experience. They identify themselves as real partners in the care process and are grateful for the opportunity to improve the care provided to other patients by using their own experience and by bringing changes to the patient-professional relationship, particularly in terms of communication. They also become better acquainted with the complexity of the health system and its organization. However, their participation in CICs raised two challenges. The first was their availability, as their professional schedules did not always allow them to participate in meetings. The second was their frustration with the slow decision-making process and implementation of necessary measures for quality improvement of healthcare and services. This study highlights the contribution of successful patient participation to quality of care improvement. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens.

Abstract 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.