BackgroundPatient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.ObjectiveSystematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.MethodsWe searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject‐matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.ResultsIn total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.ConclusionA growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

s41 s41 1 re partie-Nouveaux rôles et compétences des patients Synthèse des connaissances Le « Montreal model » : enjeux du partenariat relationnel entre patients et professionnels de la santé The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals

The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Although patient-centered approaches have contributed to significant advances in care and to treatments that more fully respect patients' preferences, values, and personal experiences, the reality is that health care professionals still hold a monopoly on the role of healer. Patients live with their conditions every day and are experts when it comes to their own experiences of illness; this expertise should be welcomed, valued, and fostered by other members of the care team. The patient-as-partner approach embodies the ideal of making the patient a bona fide member of the health care team, a true partner in his or her care. Since 2010, the University of Montreal, through the Direction of Collaboration and Patient Partnership, has embraced this approach. Patients are not only active members of their own health care team but also are involved in research and provide valuable training to health sciences students. Including patients as full partners in the health care team entails a significant shift in both the medical practice and medical education cultures. In this perspective, the authors describe this innovative approach to patient care, including the conceptual framework used in its development and the main achievements of patient partners in education, health care, and research.

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 tha 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 brin 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 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. KeywordsPatient engagement, quality and safety management, patient experience, patient partnership, quality improvement committee, quality of care, qualitative method

Plain English summaryIn recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research.We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement.This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP.Abstract Background Involving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses. Results The researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support. Conclusion This study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.

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 and citizen engagement is taking root in a number of healthcare organizations. These initiatives show promising results but require a supportive environment to bring systemic and sustainable impacts. In this synthesis article, we propose an ecosystemic perspective on engagement in health, outlining key elements at the individual, organizational and systemic levels supporting reciprocal and effective relationships among all partners to provide conditions for the co-production of health and care. We argue that growing a healthy engagement ecosystem requires: (1) building local and national "hubs" to facilitate learning and capacity building across engagement domains, populations and contexts; (2) supporting reciprocal partnerships based on co-leadership; and (3) strengthening capacities for research, evaluation and co-training of all partners to support reflective engagement practices that bring about effective change. An Ecosystemic, Reciprocal Perspective on Patient and Citizen Engagement Relationships Ecosystems are communities of individuals interacting with their environment (Gurevitch et al. 2002: 522). Ecosystems are "holonic structures": they are made of entities that are a whole and a part of a larger system at the same time (e.g., atoms, cells, organisms, planet), with the levels dynamically interacting with one another (Koestler 1967: 48). In healthcare, individuals are embedded within the healthcare organizations and systems they interact with (Mella and Gazzola 2017). An ecosystemic perspective on patient and citizen engagement reminds us that healthcare, in its essence, is about relationships between people. This perspective also highlights the idea that these relationships

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.