Le mouvement en faveur de l'engagement des patients et du public est une tendance internationale ... more Le mouvement en faveur de l'engagement des patients et du public est une tendance internationale aux implications majeures pour les systèmes de santé contemporains. Le "modèle de Montréal" s'appuie sur une relation de partenariat avec les patients et le public. Le partenariat est une relation réciproque d'engagement entre les patients et les professionnels, caractérisé par le co-leadership, la co-construction et la co-responsabilité.ce modèle s'ancre dans une vision des soins o le patient est considéré comme un soignant, un membre à part entière de l'équipe de soin, et un coproducteur de santé.La complémentarité des savoirs professionnels et des savoirs expérientiels issus de la vie avec la maladie est un des fondements de cette approche. Depuis 2010, le modèle de Montréal a été implanté dans des dizaines de projets au niveau des soins, de l'enseignement, de la recherche et de la communauté démontrant la faisabilité de cette approche dans différents contextes…
BackgroundPatients are increasingly seen as active partners in healthcare. While patient involvem... more BackgroundPatients are increasingly seen as active partners in healthcare. While patient involvement in individual clinical decisions has been extensively studied, no trial has assessed how patients can effectively be involved in collective healthcare decisions affecting the population. The goal of this study was to test the impact of involving patients in setting healthcare improvement priorities for chronic care at the community level.MethodsDesign: Cluster randomized controlled trial. Local communities were randomized in intervention (priority setting with patient involvement) and control sites (no patient involvement). Setting: Communities in a canadian region were required to set priorities for improving chronic disease management in primary care, from a list of 37 validated quality indicators. Intervention: Patients were consulted in writing, before participating in face-to-face deliberation with professionals. Control: Professionals established priorities among themselves, wi...
Background Partnering with patients in healthcare research now benefits from a strong rationale a... more Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research...
International Journal of Health Policy and Management
Patient engagement practices are increasingly incorporated in health research, governance, and ca... more Patient engagement practices are increasingly incorporated in health research, governance, and care. More recently, a large number of evaluation tools and metrics have been developed to support engagement evaluation. This growing interest in evaluation reflects a maturation of the patient engagement field, moving from a "craft" to a reflective "art and science," with more explicit expected benefits and risks, better understood conditions for success and failure, and increasingly rigorous evaluation instruments to improve engagement theories and interventions. It also supports a more critical view of engagement science, moving beyond reductionist views of engagement as a "black box technology" to a more subtle view of this broad category of complex interventions. Structured evaluation can advance patient engagement by supporting more reflective partnerships between patients, clinicians, health system leaders and citizens. This can help clarify mutual (an...
International Journal of Health Policy and Management
Background: While responsible innovation in health (RIH) suggests that health innovations could b... more Background: While responsible innovation in health (RIH) suggests that health innovations could be purposefully designed to better support health systems, little is known about the system-level challenges that it should address. The goal of this paper is thus to document what is known about health systems’ demand for innovations. Methods: We searched 8 databases to perform a scoping review of the scientific literature on health system challenges published between January 2000 and April 2016. The challenges reported in the articles were classified using the dynamic health system framework. The countries where the studies had been conducted were grouped using the human development index (HDI). Frequency distributions and qualitative content analysis were performed. Results: Up to 1391 challenges were extracted from 254 articles examining health systems in 99 countries. Across countries, the most frequently reported challenges pertained to: service delivery (25%), human resources (23%)...
The value proposition of including patients at each step of the research process is that patient ... more The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research. To examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance patient engagement. Qualitative methods were used to collect perspectives and models of engagement from a diverse group of patients, researchers and clinicians. The project culminated with a workshop involving these stakeholders. The workshop used a novel approach, combining World Café and Future Search techniques, to compare and contrast aspects of patient engagement and community engagement. ...
Patient engagement helps to improve health outcomes and health care quality. However, the overall... more Patient engagement helps to improve health outcomes and health care quality. However, the overall relationships among patient engagement measures and health outcomes remain unclear. This study aims to integrate expert knowledge and survey data for the identification of measures that have extensive associations with other variables and can be prioritized to engage patients. We used the 2014 International Health Policy Survey (IHPS), which provided information on elder adults in 11 countries with details in patient characteristics, healthcare experiences, and patient-physician communication. Patient engagement or support was measured with eight variables including patients' treatment choices, involvement, and treatment priority setting. Three types of care were identified: primary, specialist and chronic illness care. Specialists were doctors specializing in one area of health care. Chronic illness included eight chronic conditions surveyed. Expert knowledge was used to assist var...
Background Patient and public engagement is growing, but evaluative efforts remain limited. Revie... more 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 o...
To make pragmatic recommendations on best practices for the engagement of patients in emergency m... more To make pragmatic recommendations on best practices for the engagement of patients in emergency medicine (EM) research. We created a panel of expert Canadian EM researchers, physicians, and a patient partner to develop our recommendations. We used mixed methods consisting of 1) a literature review; 2) a survey of Canadian EM researchers; 3) qualitative interviews with key informants; and 4) feedback during the 2017 Canadian Association of Emergency Physicians (CAEP) Academic Symposium. We synthesized our literature review into categories including identification and engagement, patients' roles, perceived benefits, harms, and barriers to patient engagement; 40/75 (53% response rate) invited researchers completed our survey. Among respondents, 58% had engaged patients in research, and 83% intended to engage patients in future research. However, 95% stated that they need further guidance to engage patients. Our qualitative interviews revealed barriers to patient engagement, includi...
The patient medical home (PMH) model aims to improve patient satisfaction and health outcomes in ... more The patient medical home (PMH) model aims to improve patient satisfaction and health outcomes in Canada, but since its introduction in 2009, there has been no evaluation of the extent to which primary care conforms with PMH attributes. Our objective was to compare current primary care across Canada with the 10 goals of the PMH model. A cross-sectional survey of primary care organization and delivery was conducted in Canadian provinces to evaluate the PMH-based attributes of primary care practices. Family physician and patient responses were mapped to the 10 goals of the PMH model. We used regression models to describe the provinces' success in meeting the goals, taking specific practice characteristics into account. We created a PMH composite score by weighting each goal equally for each practice and aggregating these by province. The PMH score is the sum of the values for each goal, which were scored from 0 to 1; a score of 10 indicates that all 10 goals of the PMH model were a...
Clinical guidelines and health technology assessments are valuable instruments to improve the qua... more Clinical guidelines and health technology assessments are valuable instruments to improve the quality of healthcare delivery and aim to integrate the best available evidence with real-world, expert context. The role of patient and public involvement in their development has grown in recent decades, and this article considers the international literature exploring aspects of this participation, including the integration of experiential and scientific knowledge, recruitment strategies, models of involvement, stages of involvement, and methods of evaluation. These developments have been underpinned by the parallel rise of public involvement and evidence-based medicine as important concepts in health policy. Improving the recruitment of guideline group chairs, widening evidence reviews to include patient preference studies, adapting guidance presentation to highlight patient preference points and providing clearer instructions on how patient organisations can submit their intelligence a...
Medical end-of-life practices are hotly debated in Canada, and data from other countries are used... more Medical end-of-life practices are hotly debated in Canada, and data from other countries are used to support arguments. The objective of this pilot study was twofold: to adapt and validate a questionnaire designed to measure the prevalence of these practices in Canada and the underlying decision-making process, and to assess the feasibility of a nationally representative study. In phase 1, questionnaires from previous studies were adapted to the Canadian context through consultations with a multidisciplinary committee and based on a scoping review. The modified questionnaire was validated through cognitive interviews with 14 physicians from medical specialties associated with a higher probability of being involved with dying patients recruited by means of snowball sampling. In phase 2, we selected a stratified random sample of 300 Canadian physicians in active practice from a national medical directory and used the modified tailored method design for mail and Web surveys. There were...
Le mouvement en faveur de l'engagement des patients et du public est une tendance internationale ... more Le mouvement en faveur de l'engagement des patients et du public est une tendance internationale aux implications majeures pour les systèmes de santé contemporains. Le "modèle de Montréal" s'appuie sur une relation de partenariat avec les patients et le public. Le partenariat est une relation réciproque d'engagement entre les patients et les professionnels, caractérisé par le co-leadership, la co-construction et la co-responsabilité.ce modèle s'ancre dans une vision des soins o le patient est considéré comme un soignant, un membre à part entière de l'équipe de soin, et un coproducteur de santé.La complémentarité des savoirs professionnels et des savoirs expérientiels issus de la vie avec la maladie est un des fondements de cette approche. Depuis 2010, le modèle de Montréal a été implanté dans des dizaines de projets au niveau des soins, de l'enseignement, de la recherche et de la communauté démontrant la faisabilité de cette approche dans différents contextes…
BackgroundPatients are increasingly seen as active partners in healthcare. While patient involvem... more BackgroundPatients are increasingly seen as active partners in healthcare. While patient involvement in individual clinical decisions has been extensively studied, no trial has assessed how patients can effectively be involved in collective healthcare decisions affecting the population. The goal of this study was to test the impact of involving patients in setting healthcare improvement priorities for chronic care at the community level.MethodsDesign: Cluster randomized controlled trial. Local communities were randomized in intervention (priority setting with patient involvement) and control sites (no patient involvement). Setting: Communities in a canadian region were required to set priorities for improving chronic disease management in primary care, from a list of 37 validated quality indicators. Intervention: Patients were consulted in writing, before participating in face-to-face deliberation with professionals. Control: Professionals established priorities among themselves, wi...
Background Partnering with patients in healthcare research now benefits from a strong rationale a... more Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research...
International Journal of Health Policy and Management
Patient engagement practices are increasingly incorporated in health research, governance, and ca... more Patient engagement practices are increasingly incorporated in health research, governance, and care. More recently, a large number of evaluation tools and metrics have been developed to support engagement evaluation. This growing interest in evaluation reflects a maturation of the patient engagement field, moving from a "craft" to a reflective "art and science," with more explicit expected benefits and risks, better understood conditions for success and failure, and increasingly rigorous evaluation instruments to improve engagement theories and interventions. It also supports a more critical view of engagement science, moving beyond reductionist views of engagement as a "black box technology" to a more subtle view of this broad category of complex interventions. Structured evaluation can advance patient engagement by supporting more reflective partnerships between patients, clinicians, health system leaders and citizens. This can help clarify mutual (an...
International Journal of Health Policy and Management
Background: While responsible innovation in health (RIH) suggests that health innovations could b... more Background: While responsible innovation in health (RIH) suggests that health innovations could be purposefully designed to better support health systems, little is known about the system-level challenges that it should address. The goal of this paper is thus to document what is known about health systems’ demand for innovations. Methods: We searched 8 databases to perform a scoping review of the scientific literature on health system challenges published between January 2000 and April 2016. The challenges reported in the articles were classified using the dynamic health system framework. The countries where the studies had been conducted were grouped using the human development index (HDI). Frequency distributions and qualitative content analysis were performed. Results: Up to 1391 challenges were extracted from 254 articles examining health systems in 99 countries. Across countries, the most frequently reported challenges pertained to: service delivery (25%), human resources (23%)...
The value proposition of including patients at each step of the research process is that patient ... more The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research. To examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance patient engagement. Qualitative methods were used to collect perspectives and models of engagement from a diverse group of patients, researchers and clinicians. The project culminated with a workshop involving these stakeholders. The workshop used a novel approach, combining World Café and Future Search techniques, to compare and contrast aspects of patient engagement and community engagement. ...
Patient engagement helps to improve health outcomes and health care quality. However, the overall... more Patient engagement helps to improve health outcomes and health care quality. However, the overall relationships among patient engagement measures and health outcomes remain unclear. This study aims to integrate expert knowledge and survey data for the identification of measures that have extensive associations with other variables and can be prioritized to engage patients. We used the 2014 International Health Policy Survey (IHPS), which provided information on elder adults in 11 countries with details in patient characteristics, healthcare experiences, and patient-physician communication. Patient engagement or support was measured with eight variables including patients' treatment choices, involvement, and treatment priority setting. Three types of care were identified: primary, specialist and chronic illness care. Specialists were doctors specializing in one area of health care. Chronic illness included eight chronic conditions surveyed. Expert knowledge was used to assist var...
Background Patient and public engagement is growing, but evaluative efforts remain limited. Revie... more 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 o...
To make pragmatic recommendations on best practices for the engagement of patients in emergency m... more To make pragmatic recommendations on best practices for the engagement of patients in emergency medicine (EM) research. We created a panel of expert Canadian EM researchers, physicians, and a patient partner to develop our recommendations. We used mixed methods consisting of 1) a literature review; 2) a survey of Canadian EM researchers; 3) qualitative interviews with key informants; and 4) feedback during the 2017 Canadian Association of Emergency Physicians (CAEP) Academic Symposium. We synthesized our literature review into categories including identification and engagement, patients' roles, perceived benefits, harms, and barriers to patient engagement; 40/75 (53% response rate) invited researchers completed our survey. Among respondents, 58% had engaged patients in research, and 83% intended to engage patients in future research. However, 95% stated that they need further guidance to engage patients. Our qualitative interviews revealed barriers to patient engagement, includi...
The patient medical home (PMH) model aims to improve patient satisfaction and health outcomes in ... more The patient medical home (PMH) model aims to improve patient satisfaction and health outcomes in Canada, but since its introduction in 2009, there has been no evaluation of the extent to which primary care conforms with PMH attributes. Our objective was to compare current primary care across Canada with the 10 goals of the PMH model. A cross-sectional survey of primary care organization and delivery was conducted in Canadian provinces to evaluate the PMH-based attributes of primary care practices. Family physician and patient responses were mapped to the 10 goals of the PMH model. We used regression models to describe the provinces' success in meeting the goals, taking specific practice characteristics into account. We created a PMH composite score by weighting each goal equally for each practice and aggregating these by province. The PMH score is the sum of the values for each goal, which were scored from 0 to 1; a score of 10 indicates that all 10 goals of the PMH model were a...
Clinical guidelines and health technology assessments are valuable instruments to improve the qua... more Clinical guidelines and health technology assessments are valuable instruments to improve the quality of healthcare delivery and aim to integrate the best available evidence with real-world, expert context. The role of patient and public involvement in their development has grown in recent decades, and this article considers the international literature exploring aspects of this participation, including the integration of experiential and scientific knowledge, recruitment strategies, models of involvement, stages of involvement, and methods of evaluation. These developments have been underpinned by the parallel rise of public involvement and evidence-based medicine as important concepts in health policy. Improving the recruitment of guideline group chairs, widening evidence reviews to include patient preference studies, adapting guidance presentation to highlight patient preference points and providing clearer instructions on how patient organisations can submit their intelligence a...
Medical end-of-life practices are hotly debated in Canada, and data from other countries are used... more Medical end-of-life practices are hotly debated in Canada, and data from other countries are used to support arguments. The objective of this pilot study was twofold: to adapt and validate a questionnaire designed to measure the prevalence of these practices in Canada and the underlying decision-making process, and to assess the feasibility of a nationally representative study. In phase 1, questionnaires from previous studies were adapted to the Canadian context through consultations with a multidisciplinary committee and based on a scoping review. The modified questionnaire was validated through cognitive interviews with 14 physicians from medical specialties associated with a higher probability of being involved with dying patients recruited by means of snowball sampling. In phase 2, we selected a stratified random sample of 300 Canadian physicians in active practice from a national medical directory and used the modified tailored method design for mail and Web surveys. There were...
Canadian family physician Médecin de famille canadien, 2015
To determine health care professionals' understanding of the current legal status of differen... more To determine health care professionals' understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. Quebec. Health care professionals (physicians and nurses). Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient's request, and this misconception ...
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