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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., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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., (© 2021. The Author(s).)

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., (© 2021. The Author(s).)

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., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Context: The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease., Objectives: (i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective., Methodology: All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis., Results: Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change., Conclusion: The combination of methods to collect and integrate patients' knowledge and patient associations' perspectives helped develop a comprehensive understanding of a controversial object of evaluation.

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., (© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Over the last few years, the role of patients in the health system has become essential to improving the quality of care and services. However, the literature shows that patient engagement is not always ideally applied to improve the quality and safety of care and that patient engagement can be tokenistic. Through experiences conducted in Quebec, it is possible to outline a structured process involving both professional stakeholders and patients that illustrates optimal conditions to be applied for successful teamwork involving patients., (Copyright © 2018 Longwoods Publishing.)

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., Competing Interests: The authors have declared that no competing interests exist.

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).

The issue on "The Patient Experience in Ontario 2020: What is Possible?" taught us how Ontario is trying to shift to a consistent culture of patient engagement at all levels of its healthcare system, from clinical to organizational and political. In this commentary, the authors share some of the avenues that have been taken in Quebec to structure patient engagement in a comprehensive way within and across stakeholder and patient populations. The model selected in Quebec is based on partnership of care and services, which includes not only patient involvement, but also interprofessional collaboration among professionals (Pomey et al. 2015b, 2015c).

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.

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: 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]

User engagement in innovation processes is crucial for the development of sustainable healthcare. One promising user-centred approach used to integrate users' experiential knowledge in the development of innovations is the Living Lab (LL). However, we lack a systematic understanding of the processes, methods and factors that lead to more effective user engagement. The objective of this scoping review is to map and systematically present current research on user engagement in Healthcare Living Labs (HLLs) to enhance understanding and inspire future research. Our review shows that the level of user engagement is still low given the limited use of methods tailored to support it and that HLL are predominantly used in technology and clinical innovation. We offer a clearer depiction and description of the methods innovation managers could use to foster greater user engagement in HLL. [ABSTRACT FROM AUTHOR]

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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]