Patient Learning Pathway: Identifying Patient Competencies in Teledermatology for Effective Management of Dermatological Conditions.

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

What are the views of Quebec and Ontario citizens on the tiebreaker criteria for prioritizing access to adult critical care in the extreme context of a COVID-19 pandemic?

BACKGROUND: The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario's protocols were presented to the public in a democratic deliberation during the summer of 2022. OBJECTIVES: (1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. METHODS: This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. RESULTS: A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value - a less acceptable tiebreaker. CONCLUSION: Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Developing a living lab in ethics: Initial issues and observations.

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion-oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É-LABO, we approach challenges as learning opportunities to ask not only "how" questions but also "why" questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics.

Adopting a learning pathway approach to patient partnership in telehealth: A proof of concept.

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.

The Ecology of Engagement: Fostering cooperative efforts in health with patients and communities.

CONTEXT: Patients and community members are engaged in nearly every aspect of health systems. However, the engagement literature remains siloed and fragmented, which makes it difficult to connect engagement efforts with broader goals of health, equity and sustainability. Integrated and inclusive models of engagement are needed to support further transformative efforts. METHODS: This article describes the Ecology of Engagement, an integrated model of engagement. The model posits that: (1) Health ecosystems include all members of society engaged in health; (2) Engagement is the 'together' piece of health and healthcare (e.g., caring for each other, preventing, researching, teaching and building policies together); (3) Health ecosystems and engagement are interdependent from each other, both influencing health, equity, resilience and sustainability. CONCLUSION: The Ecology of Engagement offers a common sketch to foster dialogue on engagement across health ecosystems. The model can drive cooperative efforts with patients and communities on health, equity, resilience and sustainability. PATIENTS AND PUBLIC CONTRIBUTION: Three of the authors have lived experiences as patients. One has a socially disclosed identity as a patient partner leader with extensive experience in engagement (individual care, education, research, management and policy). Two authors have significant experience as patients and informal caregivers, which were mobilized in descriptive illustrations. A fourth author has experience as an engaged citizen in health policy debates. All authors have professional lived experience in health (manager, researcher, health professional, consultant and educator). Six patient and caregiver partners with lived experience of engagement (other than the authors) contributed important revisions and intellectual content.

Patient and family engagement in infection prevention in the context of the COVID-19 pandemic: defining a consensus framework using the Q methodology - NOSO-COVID study protocol.

INTRODUCTION: Healthcare-associated infections are an important patient safety concern, especially in the context of the COVID-19 pandemic. Infection prevention and control implemented in healthcare settings are largely focused on the practices of healthcare professionals. Patient and family engagement is also recognised as an important patient safety strategy. The extent to which patients and families can be engaged, their specific roles and the strategies that support their engagement in infection prevention remain unclear. The overarching objective of the proposed study is to explore how patients and families can effectively be engaged in infection prevention by developing a consensus framework with key stakeholders. DESIGN AND METHODS: The proposed study is based on a cross-sectional exploratory study at one of the largest university hospitals in North America (Montreal, Canada). The targeted population is all healthcare professionals, managers and other non-clinical staff members who work on clinical units, and the in-patients and their families. The study is based on Q methodology that takes advantage of both quantitative and qualitative methods to identify the consensus among the various stakeholders. This exploratory Q research approach will provide a structured way to elicit the stakeholders' perspectives on patient and family engagement in infection prevention. ETHICS AND DISSEMINATION: The research ethics board approved this study. The research team plans to disseminate the findings through different channels of communication targeting healthcare professionals, managers in healthcare settings, and patients and family caregivers. The findings will also be disseminated through peer-reviewed journals in healthcare management and in quality and safety improvement.

Reducing social isolation during the COVID-19 pandemic: Assessing the contribution of courtesy phone calls by volunteers.

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

Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience.

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.

Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.

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.

A Canadian Take on the International Patient Engagement Revolution.

This Special Issue of Healthcare Quarterly aims to provide an overview of patient and family engagement in healthcare system improvement. It brings together experts (patients, clinicians, researchers, policy makers) from across the country tasked with sharing their experiential learning regarding engagement in the Canadian healthcare system. A team of experts from the Netherlands was added to this group of authors to provide insights into European developments in this area.

Growing a Healthy Ecosystem for Patient and Citizen Partnerships.

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.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.

BACKGROUND: Patient 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. OBJECTIVE: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS: We 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. RESULTS: In 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. CONCLUSION: A 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.

What does patient engagement mean for Canadian National Transplant Research Program Researchers?

PLAIN ENGLISH SUMMARY: In 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.

Perspectives of Patients, Caregivers and Researchers on Research Priorities in Donation and Transplantation in Canada: A Pilot Workshop.

BACKGROUND: It is vitally important to seek input from key stakeholders to increase the quality and relevance of health-related research and accelerate its adoption into practice. Patients and caregivers have rarely been involved in setting research priorities in the transplantation and donation field. The objectives of this explorative study are: (i) to discuss research priorities within the Canadian National Transplant Research Program during a priority-setting exercise with patients, caregivers, organ donors and researchers and (ii) to compare the identified priorities with research published in 2 prestigious transplantation journals. METHODS: A pilot workshop attended by 10 patients and caregivers and 5 researchers was held in Montréal (Quebec, Canada) in August 2014 to identify research priorities. Priorities were identified using a thematic analysis of the workshop transcription conducted by multiple coders. These priorities were compared with the topics of research articles published in 2 major transplantation journals between 2012 and 2014. RESULTS: The themes of the 10 research priorities identified by study participants were related to different research domains: social, cultural, and environmental health factors (4); biomedical or clinical (4); and research about health systems and services (2). 26.7% of the research articles published were related to the identified priorities. Thirteen percent looked at ways to improve graft survival and 8.5% looked at the development of tolerance, 2 priorities identified by participants. Fewer than 5% examined the other 8 research priorities identified as important by workshop participants. CONCLUSIONS: This is the first study reporting patients' and researchers' priorities in the field of transplantation and donation in Canada. There is a discrepancy between topics that key stakeholders find important and research published in 2 major transplantation journals. The research priorities identified during our initial workshop will be validated through a national survey and workshop.

[THE APPLICATION OF AN INTEGRATED MODEL OF PARTNERSHIP- PATIENT IN THE PROFESSIONALS OF THE HEALTH TRAINING: TOWARDS NEW ONE HUMANIST PARADIGM AND ETHICS OF CO-CONSTRUCTION KNOWLEDGES IN HEALTH]. / L'APPLICATION D'UN MODÈLE INTÉGRE DE PARTENARIAT-PATIENT DANS LA FORMATION DES PROFESSIONNELS DE LA SANTÉ: VERS UN NOUVEAU PARADIGME HUMANISTE ET ÉTHIQUE DE CO-CONSTRUCTION DES SAVOIRS EN SANTÉ.

This article presents the "Montreal model", offering the patient, if he wishes, to become a patient partner for all the decisions that concerns him. We are presently witnessing, presently, major transformations in western societies. Chronic diseases affect a growing proportion of the population, leading a transition from the ascendancy of acute care to an ascendancy of chronic care. Other societal factors such as the consumerism, the individualism, the democratization of the medical information (accelerated by the advent of Internet) and the casualization of a growing part of citizens influence this evolution. In this context, where the nature and the level of patients and their families needs are changing as their expectations towards healthcare systems, one of the promising ways to answer these stakes is a greater participation of patients in their own care. Since 2010, a new relational model, based on the partnership of care between patients and healthcare professionals, was developed in the medicine Faculty of the University of Montreal. This model leans on the recognition of the experiential knowledge of the patients in complementarity with the scientific knowledge of the healthcare professionals. It's the continuity of the participation and the engagement of patients which can be applied to the whole healthcare system, in individual or collective relationship in interdisciplinary. This model is presently in implementation phase in Quebec in the training of the healthcare professionals, in healthcare organisations, as well as in the medical education and in research.

[Experimentation of care partners program in psychiatry: the model Montreal]. / L'expérimentation du Programme partenaires de soins en psychiatrie : le modèle de Montréal.

UNLABELLED: The approach of the partnership of care and services developed by the direction collaboration dans patient partnership (DCPP) of the Faculty of medicine of the University of Montreal, considers the patient as a full care actor, in the same way as healthcare professionals, his experientiel knowledges are recognized and the patient develops gradually his self-determination. Since 2010, in order to allow cultural changes involved with this approach, the 'Program Partners of Care' (PPC) facilitated resource patient' integration and involvement into Continuous Improvement Committees (CIC), within 29 general and specialized health care teams in 19 health and social services facilities in Quebec, among wich four teams specialized in mental health. The purpose of the article is to describe briefly this approach, to demonstrate that it is successfully applicable to mental health clienteles, under certain conditions. METHOD: The evaluation of this approach arises from quantitative data of self-adminitered questionnaires by the participants of continuous Improvement Commettes, as well as a reflexive approach of the participants and the members of the DCPP to understand the processes and the implemented services. The results reveal that the objectives of transformation selected through the specialized mental health CIC refer to welcoming process in the facilities, to the period of transition from a facilities service to another one, to the patient involvement in their own Interdisciplinary Plan (IIP). Among the faciliting factors for patients' participation in thse CIC: the caregivers and managers' adaptability to adjust to a patient's pace; the identification to the best communication mechanisms to get in touch with them; faciliting discussion in small working group; an existing trust relationship with the members of the CIC; the support of the resource patients between them as well as support by coach patient of the DCPP. The members of the CIC develop a sense of pride, an energy, a new motivation and a group cohesion. The patient develop a sens of belonging to the team, they experience a higher self-esteem as well as developping a sens of usefulness, by contributing to the improvement of specialized mental health facilities. Giving back, as well as participing in the better quality of services fot the benefit of other patients make a whole lot of sense for them, this process even sometimes allows their full revovrey. In conclusion, the report reveals the applicicability of this approach in the field of the mental health. It il all the more attainable when the winning conditions as the closeness of the managers specialized in the domain, the choice of significant targets of continuous improvement for the patients are taken into account.