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

Abstract Background This study aims to describe the main type 2 diabetes mellitus (T2DM) quality improvement (QI) challenges identified by primary care teams in the province of Quebec who participated in the COMPAS + QI collaborative. Methods A qualitative descriptive design was used to analyse the results of 8 COMPAS + workshops conducted in 4 regions of the province between 2016 and 2020. Deductive content analysis was performed to classify the reported QI priorities under the Consolidated Framework for Implementation Research domains; and proposed change strategies under the Behavior Change Wheel (BCW) intervention functions. Results A total of 177 participants attended the T2DM COMPAS + workshops. Three QI priorities were identified: (1) lack of coordination and integration of T2DM care and services; (2) lack of preventive services for pre-diabetes and T2DM; and (3) lack of integration of the patients-as-partners approach to support T2DM self-management. The proposed QI strategies to address those priorities were classified under the education, training, persuasion, habilitation and restructuring BCW intervention functions. Conclusion This study provides insights on how QI collaboratives can support the identification of QI priorities and strategies to improve T2DM management in primary care.

Abstract Background Being attached to a primary care (PC) provider is at the core of a strong primary health care system. Centralized waiting lists (CWL) for unattached patients have been implemented in eight provinces of Canada to support the attachment process. In Quebec, the Ministry of Health mandated the implementation of Primary Care Access Points (GAP) across the province to help unattached patients navigate the health system while awaiting attachment through the CWL. Several local health territories developed complementary innovations to the GAP to respond to local population needs. This paper aims to describe five organizational innovations implemented locally. Methods This multi-case qualitative study was conducted in four local health territories in the province of Quebec. Fifty-two semi-structured interviews with healthcare managers, nurses, physicians, other health professionals and administrative staff were conducted between April 2023 and April 2024. An interview guide was developed based on existing frameworks on the implementation of innovations and the evaluation of the GAP. Thematic analysis was conducted using NVivo software. Inductive and deductive approaches were used to develop relevant codes and themes. Logic models were built to describe the organizational innovations. Results Five organizational innovations are described. First, a multidisciplinary clinic aimed at responding to patients with mental health issues was implemented. Second, a nurse clinic was implemented to provide temporary care for patients with unstable chronic illnesses. The third innovation is a mobile proximity clinic where unattached GAP patients are first evaluated by a paramedic before receiving care from a nurse. Fourth, a pharmacist trajectory was implemented to increase engagement of community pharmacists to respond to GAP patients. The last innovation is a decentralized GAP offering in-person nursing care to unattached GAP patients. Conclusions Descriptions of these five innovations are key to inform other territories and provinces on ways to improve access for unattached patients while they are waiting to be attached. The introduction of the GAP and the organizational innovations, suggests a transition where access to PC services does not rely solely on attachment status.

Abstract Background The use of mobile health apps for remote monitoring has considerable potential for patient care. However, more research is needed to gather patients’ experience with their use. This study evaluates heart failure patients’ experience of the effects of remote monitoring on the management of heart failure (HF) using a smartphone app, the challenges faced in such use, and patients’ suggestions for improving the efficacy of this device. Method A qualitative study was conducted with all patients who had used the TakeCare™ app for at least three months during the exploratory phase of the Continuum project. Patients were recruited before COVID-19 began, and they used the app during this period. The app allows patients to submit their daily vital signs and answer questions about their symptoms to help the clinical professionals adjust their treatment plan as needed. Individual interviews were conducted by telephone or videoconference using a semi-structured individual interview guide. All interviews were recorded, transcribed and analyzed using the thematic analysis method. Results Of the 29 patients invited, 5 had since died, 10 did not respond, two gave positive feedback on the app but declined the interview, and 12 patients agreed to participate in an individual interview. The participants all liked the app’s ease of use. They particularly praised the contribution it made to monitoring their disease, both by themselves and by clinicians. The app also allowed them to stay connected to their clinical team and have better access to healthcare professionals. Patients suggested, as an improvement, that the feedback and communication features should be personalized to make them more individualized and interactive. Conclusion The TakeCare™ smartphone app was well received by patients with heart failure. Its use could facilitate better remote monitoring of heart conditions in the home as well as improve access to clinical teams.

BackgroundThe COVID-19 pandemic was an unprecedent challenge to public health systems, with 95% of cases in Quebec sent home for self-isolation. To ensure continuous care, we implemented an intervention supported by a patient portal (Opal) to remotely monitor at-home patients with COVID-19 via daily self-reports of symptoms, vital signs, and mental health that were reviewed by health care professionals. ObjectiveWe describe the intervention’s implementation, focusing on the (1) process; (2) outcomes, including feasibility, fidelity, acceptability, usability, and perceived response burden; and (3) barriers and facilitators encountered by stakeholders. MethodsThe implementation followed a co-design approach operationalized through patient and stakeholder engagement. The intervention included a 14-day follow-up for each patient. In the mixed methods study at the McGill University Health Centre in Montreal, Quebec, participants completed questionnaires on implementation outcomes on days 1, 7, and 14. All scores were examined against predefined success thresholds. Linear mixed models and generalized estimating equations were used to assess changes in scores over time and whether they differed by sex, age, and race. Semistructured interviews were conducted with expert patients, health care professionals, and coordinators for the qualitative analysis and submitted to thematic analysis guided by the Consolidated Framework for Implementation Research. ResultsIn total, 51 participants were enrolled between December 2020 and March 2021; 49 (96%) were included in the quantitative analysis. Observed recruitment and retention rates (51/52, 98% and 49/51, 96%) met the 75% feasibility success threshold. Over 80% of the participants found it “quite easy/very easy” to complete the daily self-report, with a completion rate (fidelity) of >75% and a nonsignificant decreasing trend over time (from 100%, 49/49 to 82%, 40/49; P=.21). Mean acceptability and usability scores at all time points exceeded the threshold of 4 out of 5. Acceptability scores increased significantly between at least 2 time points (days 1, 7, and 14: mean 4.06, SD 0.57; mean 4.26, SD 0.59; and mean 4.25, SD 0.57; P=.04). Participants aged >50 years reported significantly lower mean ease of use (usability) scores than younger participants (days 1, 7, and 14: mean 4.29, SD 0.91 vs mean 4.67, SD 0.45; mean 4.13, SD 0.89 vs mean 4.77, SD 0.35; and mean 4.24, SD 0.71 vs mean 4.72, SD 0.71; P=.004). In total, 28 stakeholders were interviewed between June and September 2021. Facilitators included a structured implementation process, a focus on stakeholders’ recommendations, the adjustability of the intervention, and the team’s emphasis on safety. However, Opal’s thorough privacy protection measures and limited acute follow-up capacities were identified as barriers, along with implementation delays due to data security–related institutional barriers. ConclusionsThe intervention attained targets across all studied implementation outcomes. Qualitative findings highlighted the importance of stakeholder engagement. Telehealth tools have potential for the remote follow-up of acute health conditions. International Registered Report Identifier (IRRID)RR2-10.2196/35760

Abstract Background The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. Methods A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients’ perceptions of APs’ contributions and suggested improvements for accessing AP support. Results Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients’ experiences and highlighted areas for enhancing this service. Conclusion This study highlights, during the care trajectory of people affected by breast cancer, APs’ contribution to patients’ emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

BackgroundHeart failure (HF) is the primary cause of hospitalization among Canadian patients aged ≥65 years. Care for HF requires regular clinical follow-ups to prevent readmissions and facilitate medical therapy optimization. Multiple barriers lead to therapeutic medical inertia including limited human resources and regional inequities. Remote patient monitoring (RPM) and digital therapeutics (DTx) solutions have been developed to improve HF management, but their adoption remains limited and underexplored. The Continuum project emerged as a collaborative initiative involving a health care center, a software start-up, and an industrial partner. ObjectiveWe aimed to develop and test the feasibility of the Continuum intervention that seamlessly combined an RPM system with a DTx solution for HF within the same software. MethodsA 3-month pre-post pilot study was conducted from October 2020 to June 2021. Patients with HF who owned a smartphone or tablet (having remote patient monitoring [RPM+]), had (1) access to a self-care app where they could enter their vital signs, weight, and HF symptoms and view educational content; (2) daily monitoring of their data by a nurse; and (3) a DTx module with automated HF medication suggestions based on national guidelines, made available to their treating medical team. Bluetooth devices were offered to facilitate data recording. Nurses on RPM monitoring could call patients and arrange appointments with their medical team. Patients without a mobile device or unable to use the app were followed in another group (without remote patient monitoring [RPM–]). ResultsIn total, 52 patients were enrolled in this study (32 RPM+ and 20 RPM–). Among patients owning a mobile device, only 14% (5/37) could not use the app. In the RPM+ group, 47% (15/32) of the patients used the app for more than 80% (67 days) of the 12-week study period. The use of our digital solution was integrated into the regular nursing workday and only 34 calls had to be made by the nurse during the study period. Only 6% (2/32) of the patients in the RPM+ group experienced at least 1 all-cause hospitalization versus 35% (7/20) of the RPM– ones during the follow-up (6%, 2/32 vs 25%, 5/20 for HF hospitalization) and patients were more likely to have their HF therapy optimized if the DTx solution was available. Quality of life improved in patients compliant with the use of the mobile app (mean score variation +10.6, SD 14.7). ConclusionsThis pilot study demonstrated the feasibility of implementing our digital solution, within the specific context of HF. The seamless integration of Continuum into nursing workflow, mobile app accessibility, and adoption by patients, were the 3 main key learning points of this study. Further investigation is required to assess the potential impacts on hospitalizations, drug optimization, and quality of life. Trial RegistrationClinicalTrials.gov NCT05377190; https://clinicaltrials.gov/study/NCT05377190 (pilot study #21.403)

Objectives The purpose of this study is to describe and evaluate, in a real-life context, the support and communicate with families (SCF) team’s contribution to maintaining communication and supporting relatives when patients are at the end of their lives by mobilising the points of view of SCF team members, healthcare professionals, managers and the relatives themselves.Design An in-depth mixed-method case study (quantitative and qualitative). Individual interviews were conducted with members of the SCF team to assess the activities and areas for improvement and with co-managers of active COVID-19 units. Healthcare professionals and managers completed a questionnaire to assess the contribution made by the SCF team. Hospitalised patients’ relatives completed a questionnaire on their experience with the SCF team.Setting The study was conducted in a university teaching hospital in the province of Québec, Canada.Participants Members of the SCF team, healthcare professionals, managers and relatives of hospitalised patients.Results Between April and July 2020, 131 telephone communications with families and healthcare professionals, 43 support sessions for relatives of end-of-life patients and 35 therapeutic humanitarian visits were carried out by members of the SCF team. Team members felt that they had played an active role in humanising care. Fully 83.1% of the healthcare professionals and managers reported that the SCF team’s work had met the relatives’ needs, while 15.1% believed that the SCF team should be maintained after the pandemic. Fully 95% of the relatives appreciated receiving the telephone calls and visits, while 82% felt that the visits had positive effects on hospitalised patients.Conclusion The COVID-19 pandemic forced the introduction of a social innovation involving support for and communication with families. The intention of this innovation was to support the complexity of highly emotional situations experienced by families during the COVID-19 pandemic.

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

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

Abstract Context Studies generally focus on one type of chronic condition and the effect of medical cannabis (MC) on symptoms; little is known about the perceptions and engagement of patients living with chronic conditions regarding the use of MC. Objectives This scoping review aims to explore: (1) what are the dimensions addressed in studies on MC that deal with patients' perceptions of MC? and (2) how have patients been engaged in developing these studies and their methodologies? Through these objectives, we have identified areas for improving future research. Methods We searched five databases and applied exclusion criteria to select relevant articles. A thematic analysis approach was used to identify the main themes: (1) reasons to use, to stop using or not to use MC, (2) effects of MC on patients themselves and empowerment, (3) perspective and knowledge about MC, and (4) discussion with relatives and healthcare professionals. Results Of 53 articles, the main interest when assessing the perceptions of MC is to identify the reasons to use MC (n = 39), while few articles focused on the reasons leading to stop using MC (n = 13). The majority (85%) appraise the effects of MC as perceived by patients. Less than one third assessed patients’ sense of empowerment. Articles determining the beliefs surrounding and knowledge of MC (n = 41) generally addressed the concerns about or the comfort level with respect to using MC. Only six articles assessed patients’ stereotypes regarding cannabis. Concerns about stigma constituted the main topic while assessing relationships with relatives. Some articles included patients in the research, but none of them had co-created the data collection tool with patients. Conclusions Our review outlined that few studies considered chronic diseases as a whole and that few patients are involved in the co-construction of data collection tools as well. There is an evidence gap concerning the results in terms of methodological quality when engaging patients in their design. Future research should evaluate why cannabis’ effectiveness varies between patients, and how access affects the decision to use or not to use MC, particularly regarding the relationship between patients and healthcare providers. Future research should consider age and gender while assessing perceptions and should take into consideration the legislation status of cannabis as these factors could in fact shape perception. To reduce stigma and stereotypes about MC users, better quality and accessible information on MC should be disseminated.

Abstract Context Working with women to best meet their needs has always been central to midwifery in Quebec, Canada. The creation of birthing centres at the end of the 1990s consolidated this desire to prioritize women’s involvement in perinatal care and was intended to encourage the establishment of a care and services partnership between care providers and users. The aim of this pilot study is to evaluate the perceptions of clients, midwives and birth assistants of the way in which women are involved in partnership working in Quebec birthing centres. Methods A single qualitative case and pilot study was conducted with midwives (n = 5), birth assistants (n = 4), a manager (n = 1), clients (n = 5) and members of the users’ committee (n = 2) at a birthing centre in Quebec, Canada in July and August 2023. The partnership was evaluated using the dimensions of a validated CADICEE questionnaire. Results The women and professionals stressed that the relationship was established in a climate of trust. The caregivers also attached importance to autonomy, information sharing and decision-making, adaptation to context, empathy and recognition of the couple’s expertise. The women confirmed that they establish a relationship of trust with the professionals when the latter show empathy and that they adapt the follow-up to their knowledge and life context. Key factors in establishing this kind of care relationship are the time given, a de-medicalized environment, the comprehensive care received, and professionals who are well-informed about the partnership. In addition, the birthing centre has a users’ committee that can put forward ideas but has no decision-making powers. Conclusions Both the women and the professionals at the birthing centre appear to be working in partnership. However, at the organizational level, the women are not involved in decision-making. A study of all birthing centres in Quebec would provide a more comprehensive picture of the situation.

Abstract Background Patient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients’ perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings. Methods An umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary. Discussion This umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified. Systematic review registration PROSPERO CRD42023421845.

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

BackgroundMultiple sclerosis (MS) is an inflammatory and degenerative disease of the central nervous system. More than 90,000 Canadians are affected; a cure is yet to be found. Available treatments to manage the disease course are only partially effective. For many years, persons with MS (PwMS) have used cannabis to relax, to reduce pain and spasticity, or to improve sleep and daily functioning, despite the lack of scientific evidence on the efficacy of specific cannabinoids [i.e., tetrahydrocannabinol (THC) and cannabidiol (CBD)] on these MS symptoms. The purpose of this clinical trial is to assess the effectiveness of different doses of these cannabinoids, alone or combined, on spasticity relief, compared to placebo. Moreover, we aim to determine which treatment is best effective to address other key MS conditions.MethodsA double-blinded, randomized, factorial, placebo-controlled trial will be performed. We intend to include up to 250 PwMS aged over 21 recruited from the Centre hospitalier de l’Université de Montréal MS Clinic. PwMS will be randomly assigned on a 1:1:1:1 ratio to one of the trial arms: THC alone, CBD alone, THC/CBD combination, or placebo, using stratified blocked randomization, with random blocks within each stratum. The primary outcome is a self-assessment of spasticity using the mean Numeric Rating Scale score over 7 days. The main outcome will be the difference in this score at 4 weeks compared to baseline. Secondary outcomes include assessments of spasticity as measured by a clinician, pain, fatigue, sleep, bowel, bladder, and sexual dysfunction, restless legs syndrome, mental health, quality of life, mobility, cognitive functioning, and adverse events. Treatment responders are eligible for a 12-week extension phase, using the same treatment allocation and assessments.DiscussionPrevious clinical studies examined the efficacy of cannabis-based medicines in PwMS, mostly using products with 1:1 THC/CBD ratio. The major barrier to effectively use cannabis in real-world clinical settings is the lack of evidence on benefits of specific cannabinoids and information on possible related risks. The CANSEP study will contribute to overcome these limitations and identify the risks and benefits of cannabis-based treatments in PwMS.Clinical trial registrationClinicalTrials.Gov, NCT05092191.

Abstract Objectives Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. Methods A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools. Results The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs’ activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. Conclusion Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

BackgroundLiver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increasing number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplantation. The LT clinic at the Centre hospitalier de l’Université de Montréal (CHUM) is developing a new health care model across the entire continuum of pre-, peri-, and posttransplant care that features patient monitoring by an interdisciplinary team, including an accompanying patient; a digital platform to host a clinical plan; a learning program; and data collection from connected objects. ObjectiveThis study aims to (1) evaluate the outcomes following the implementation of a patient platform with connected devices and an accompanying patient, (2) identify implementation barriers and facilitators, (3) describe service outcomes in terms of health outcomes and the rates and nature of contact with the accompanying patient, (4) describe patient outcomes, and (5) assess the intervention’s cost-effectiveness. MethodsSix types of participants will be included in the study: (1) patients who received transplants and reached 1 year after transplantation before September 2023 (historical cohort or control group), (2) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group), (3) relatives of those patients, (4) accompanying patients who have received an LT and are interested in supporting patients who will receive an LT, (5) health care professionals, and (6) decision makers. To describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, accompanying patient logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. ResultsIn total, 5 (steering, education, clinical-technological, nurse prescription, and accompanying patient) working committees have been established for the study. Recruitment of patients is expected to start in November 2023. All questionnaires and technological platforms have been prepared, and the clinicians, stakeholders, and accompanying patient personnel have been recruited. ConclusionsThe implementation of this model in the trajectory of LT recipients at the CHUM may allow for better monitoring and health of patients undergoing transplantation, ultimately reducing the average length of hospital stay and promoting better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at the CHUM and across Quebec (potentially affecting 888 patients per year) but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision makers and will serve as a model for other initiatives involving accompanying patients, connected objects, or digital platforms. International Registered Report Identifier (IRRID)PRR1-10.2196/54440

Abstract Objectives This study aims to describe the use of patient partnership, as defined by the Montreal Model, in emergency departments (EDs) in France and report the perception of patient partnership from both the practitioner and patient perspectives. Methods This cross-sectional study was conducted between July 2020 and October 2020. First, a survey was sent to 146 heads of EDs in both teaching hospitals and non-teaching hospitals in France to assess the current practices in terms of patient partnership in service organization, research, and teaching. The perceived barriers and facilitators of the implementation of such an approach were also recorded. Then, semi-structured telephone interviews were carried out with patients involved in a service re-organization project. Results A total of 48 answers (response rate 32.9%) to the survey were received; 33.3% of respondents involved patients in projects relating to service re-organization, 20.8% involved patients in teaching projects, and 4.2% in research projects. Overall, 60.4% of the respondents were willing to involve patients in re-organization or teaching projects. The main barriers mentioned for establishing patient partnership were difficulties regarding patient recruitment and lack of time. The main advantages mentioned were the improvement in patient/caregiver relationship and new ideas to improve healthcare. When interviewed, patients mentioned the desire to improve healthcare and the necessity to involve people with different profiles and backgrounds. A too important personal commitment was the most frequently raised barrier to their engagement. All the patients recognized their positive role, and more generally, the positive role of patient engagement in service re-organization. Conclusion Although this preliminary study indicates a rather positive perception of patient partnership among heads of EDs in France and partner patients, this approach is still not widely applied in practice.

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

BackgroundArtificial intelligence (AI)–based chatbots could help address some of the challenges patients face in acquiring information essential to their self-health management, including unreliable sources and overburdened health care professionals. Research to ensure the proper design, implementation, and uptake of chatbots is imperative. Inclusive digital health research and responsible AI integration into health care require active and sustained patient and stakeholder engagement, yet corresponding activities and guidance are limited for this purpose. ObjectiveIn response, this manuscript presents a master protocol for the development, testing, and implementation of a chatbot family in partnership with stakeholders. This protocol aims to help efficiently translate an initial chatbot intervention (MARVIN) to multiple health domains and populations. MethodsThe MARVIN chatbots study has an adaptive platform trial design consisting of multiple parallel individual chatbot substudies with four common objectives: (1) co-construct a tailored AI chatbot for a specific health care setting, (2) assess its usability with a small sample of participants, (3) measure implementation outcomes (usability, acceptability, appropriateness, adoption, and fidelity) within a large sample, and (4) evaluate the impact of patient and stakeholder partnerships on chatbot development. For objective 1, a needs assessment will be conducted within the setting, involving four 2-hour focus groups with 5 participants each. Then, a co-construction design committee will be formed with patient partners, health care professionals, and researchers who will participate in 6 workshops for chatbot development, testing, and improvement. For objective 2, a total of 30 participants will interact with the prototype for 3 weeks and assess its usability through a survey and 3 focus groups. Positive usability outcomes will lead to the initiation of objective 3, whereby the public will be able to access the chatbot for a 12-month real-world implementation study using web-based questionnaires to measure usability, acceptability, and appropriateness for 150 participants and meta-use data to inform adoption and fidelity. After each objective, for objective 4, focus groups will be conducted with the design committee to better understand their perspectives on the engagement process. ResultsFrom July 2022 to October 2023, this master protocol led to four substudies conducted at the McGill University Health Centre or the Centre hospitalier de l’Université de Montréal (both in Montreal, Quebec, Canada): (1) MARVIN for HIV (large-scale implementation expected in mid-2024), (2) MARVIN-Pharma for community pharmacists providing HIV care (usability study planned for mid-2024), (3) MARVINA for breast cancer, and (4) MARVIN-CHAMP for pediatric infectious conditions (both in preparation, with development to begin in early 2024). ConclusionsThis master protocol offers an approach to chatbot development in partnership with patients and health care professionals that includes a comprehensive assessment of implementation outcomes. It also contributes to best practice recommendations for patient and stakeholder engagement in digital health research. Trial RegistrationClinicalTrials.gov NCT05789901; https://classic.clinicaltrials.gov/ct2/show/NCT05789901 International Registered Report Identifier (IRRID)PRR1-10.2196/54668

Abstract Introduction With the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues. Objectives The objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years. Methodology We conducted a qualitative descriptive evaluation study. Nineteen interviews were conducted: six with URP members and 13 with staff representatives. The documents related to the creation of the panel, the URP minutes summarising the discussions and the reports published during that period were collected and analysed. Following a preliminary round of data analysis, a debriefing meeting was conducted with a few participants to validate the results. Results The panel was set up as part of the INESSS' desire to better integrate experiential knowledge into its recommendations. Twelve projects were presented to the panel on various themes. The URP enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users. Panel members and INESSS professionals learned to work together, moving the working methods from consultation to collaboration and even coconstruction. Based on the panel's significant contribution, the INESSS decided to maintain it and to strengthen its place in its system to better integrate the experiential knowledge of users into its work. Conclusion This research illustrates how AHTAASS can set up a URP composed exclusively of users, and how it can contribute and be evaluated. It shows that URPs are structures that value the sharing of experiential knowledge of its members, humanise decision‐making and give meaning to the work done by scientific professionals. Patient or Public Contribution One patient–researcher has contributed to the preparation and writing of this manuscript.

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

Abstract Introduction Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE‐Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. Methods A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. Results In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. Conclusion By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Patient or Public Contribution Two patient–researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Abstract Background Centre hospitalier de l’Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. Methods An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. Results Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients’ ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). Conclusions This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

Background and objectives: Despite the availability of healthcare and community services dedicated to cancer survivors, these remain underutilized by young adults living with cancer (YAC; aged 18-39). A workshop was organized in Montréal, Canada, to identify the needs of YAC during their post-treatment transition period and explore existing services dedicated to YAC.Methods: We recruited seventeen stakeholders (N = 17), including seven YAC, to participate in a one-day workshop to consult about best approaches and practices to meet the needs of YAC, post-treatment. All discussions were transcribed, and a thematic qualitative analysis was performed.Results: Two main findings were identified: differences and similarities among stakeholders about perceptions of post-treatment needs; and suggestions to meet YAC needs following treatment.Conclusions: Results demonstrate the importance of collaboration among multiple stakeholders, including YAC, when designing services for YAC. Results include suggestions to improve services available through community or healthcare centres.Keywords: patient engagement, community engagement, survivorship, young adult, cancer, healthcare services

Contexte et objectifs : Bien qu’il existe des soins de santé et des services communautaires aux survivants, ceux-ci sont sous-utilisés par les jeunes adultes atteints du cancer (c’est-à-dire âgés de 18 à 39 ans). Un atelier a été organisé à Montréal (Canada) visant à cerner les besoins des JAC signalés par cette population au cours de la transition post-thérapeutique et à examiner les services qui leur sont offerts actuellement.Méthodologie : Dix-sept intervenants (n = 17) ont été recrutés, dont 7 jeunes adultes ayant eu le cancer (JAC), et nous leur avons demandé de prendre part à un atelier d’une journée visant à examiner les meilleures approches et pratiques qui permettraient de combler les besoins des JAC après le traitement. Toutes les discussions ont été transcrites, puis une analyse qualitative des thèmes a été effectuée.Résultats : Deux grands constats ressortent : les différences et les similitudes entre les parties prenantes concernant les perceptions des besoins post-traitement ; et des suggestions pour répondre aux besoins des JAC, après le traitement.Conclusions : Les résultats montrent l’importance de la collaboration entre les différents intervenants, y compris les JAC, lorsqu’il s’agit de concevoir des services destinés aux JAC. Les résultats comprennent des suggestions visant à améliorer la qualité des services offerts dans la collectivité et les établissements de soins de santé.Mots clés : participation du patient, participation de la collectivité, survie, jeune adulte, cancer, services de soins de santé

Objectives Chronic pain (CP) is a poorly recognised and frequently inadequately treated condition affecting one in five adults. Reflecting on sociodemographic disparities as barriers to CP care in Canada was recently established as a federal priority. The objective of this study was to assess sex and gender differences in healthcare utilisation trajectories among workers living with CP.Design Retrospective cohort study.Participants This study was conducted using the TorSaDE Cohort which links the 2007–2016 Canadian Community Health Surveys and Quebec administrative databases (longitudinal claims). Among 2955 workers living with CP, the annual number of healthcare contacts was computed during the 3 years after survey completion.Outcome Group-based trajectory modelling was used to identify subgroups of individuals with similar patterns of healthcare utilisation over time (healthcare utilisation trajectories).Results Across the study population, three distinct 3-year healthcare utilisation trajectories were found: (1) low healthcare users (59.9%), (2) moderate healthcare users (33.6%) and (3) heavy healthcare users (6.4%). Sex and gender differences were found in the number of distinct trajectories and the stability of the number of healthcare contacts over time. Multivariable analysis revealed that independent of other sociodemographic characteristics and severity of health condition, sex—but not gender—was associated with the heavy healthcare utilisation longitudinal trajectory (with females showing a greater likelihood; OR 2.6, 95% CI 1.6 to 4.1).Conclusions Our results underline the importance of assessing sex-based disparities in help-seeking behaviours, access to healthcare and resource utilisation among persons living with CP.

Plain English summary COVID Alert is a mobile application (app) that was developed created to help limit the spread of COVID-19 in Canada. Although promising, these apps have not been widely used by the population, in part due to limited citizen engagement in their design. The DIGICIT project (DIGITal CITizenship) was carried out in partnership with citizens, including patients, to gather public perspective in Quebec, Canada about the COVID Alert app. The purpose of this article is to describe our method of constructing a survey questionnaire with patients and citizens. We have created an advisory committee of 12 participants. Along with the research team, they created a 36-question survey. They also suggested doing focus groups to add data to the survey by reaching marginalized groups that are traditionally excluded from digital health research. We also wanted to know the experience of the participants being included in this study. We conducted interviews and did a small survey with them. They appreciated being included from the beginning of the research, being listened to, and being respected. They appreciated the creativity of the group and the brainstorming sessions. However, they would have liked the tasks to be clearer from the start. They also would have preferred to have more time in the brainstorming sessions to create the survey questions, and to have discussions outside of the meetings. The inclusion of patients and citizens is the main strength of this project. To improve their integration in health research, there needs to be good communication of project objectives. Also, meetings must be well organized, and participants must be able to evaluate their experience.

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

BackgroundThe number of elective outpatient surgeries in Canada has increased markedly in the last 10 years. However, unanticipated cancellations on the day of surgery and adverse postoperative events are frequent. Modern technologies have been shown to be of great help in the medical field in improving patient care. Thus, it is likely that dedicated technologies could also significantly improve surgical outpatients’ pathways. Therefore, the department of anesthesiology at the University of Montreal Medical Center, in collaboration with LeoMed, a telemedicine platform, has developed a telehealth solution to offer more efficient perioperative support and follow-up for patients undergoing ambulatory surgery. ObjectiveThe objective is to evaluate the medicoeconomic benefit of a dedicated perioperative telehealth platform for patients undergoing day surgery. Our hypothesis is that this dedicated telecare solution will allow more efficient patient care, which will reduce all types of medical costs related to day surgery pathways. MethodsThis study is a single-center, single-blinded, 2-group randomized controlled trial. One thousand patients aged over 18 years with internet access who are scheduled to undergo ambulatory surgery will be enrolled and randomized either to follow a perioperative path that includes a patient-tailored perioperative digital app via the LeoMed telecare platform for 1 month or to follow the standard of care, which does not offer personalized digital support. The primary outcome will be to evaluate the cost-effectiveness of the telecare platform, assessing direct costs from factors such as unanticipated cancellations on the day of surgery due to preoperative instructions not being followed, calls to the local health information line, calls to the provincial health information line, emergency department consultations, unplanned readmissions, or medical visits for problems related to the surgical procedure within the first 30 days after the intervention. The secondary outcome will be to evaluate cost utility using a questionnaire assessing quality-adjusted life years. A blinded independent research team will analyze outcomes. All data will be analyzed according to the intention-to-treat principle. A sample size of 500 subjects in each group was calculated to detect a 21% reduction in postoperative complications with a power of 90%. This study has been approved by the ethics board of Centre hospitalier de l’Université de Montréal (University of Montreal Health Centre). No employee of LeoMed was involved in the study conception, and none will be involved in either data collection or analysis. ResultsResults of this trial will be useful to determine the economic benefit of a telecare platform specifically developed for surgical outpatient pathways. ConclusionsWe believe that the deployment of a dedicated perioperative telehealth app will lead to better patient care and fewer postoperative complications, which will lower all types of costs related to surgical outpatient care. Trial RegistrationClinicalTrials.gov NCT04948632; https://ClinicalTrials.gov/ct2/show/NCT04948632 International Registered Report Identifier (IRRID)DERR1-10.2196/44006

Introduction Attachment to a primary care provider is an important component of primary care as it facilitates access. In Québec, Canada, attachment to a family physician is a concern. To address unattached patients’ barriers to accessing primary care, the Ministry of Health and Social Services mandated Québec’s 18 administrative regions to implement single points of access for unattached patients (Guichets d’accès première ligne (GAPs)) that aim to better orient patients towards the most appropriate services to meet their needs. The objectives of this study are to (1) analyse the implementation of GAPs, (2) measure the effects of GAPs on performance indicators and (3) assess unattached patients’ experiences of navigation, access and service utilisation.Methods and analysis A longitudinal mixed-methods case study design will be conducted. Objective 1. Implementation will be analysed through semistructured interviews with key stakeholders, observations of key meetings and document analysis. Objective 2. GAP effects on indicators will be measured using performance dashboards produced using clinical and administrative data. Objective 3. Unattached patients’ experiences will be assessed using a self-administered electronic questionnaire. Findings for each case will be interpreted and presented using a joint display, a visual tool for integrating qualitative and quantitative data. Intercase analyses will be conducted highlighting the similarities and differences across cases.Ethics and dissemination This study is funded by the Canadian Institutes of Health Research (# 475314) and the Fonds de Soutien à l’innovation en santé et en services sociaux (# 5-2-01) and was approved by the CISSS de la Montérégie-Centre Ethics Committee (MP-04-2023-716).

Abstract Background Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care. Objective Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care. Search Strategy A scoping review of recent peer‐reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL‐EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient‐centredness, empowerment, shared decision‐making and partnership in care. Main Results Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision‐making and patient‐centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient‐centredness, empowerment and shared decision‐making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase. Discussion and Conclusion There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time. Patient and Public Contribution This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.

Background Cardiovascular diseases are the leading cause of death and disability worldwide. Little is known about the organizational priorities of patients and clinicians involved in primary cardiovascular care. This study aimed to identify their shared top priorities and explore on which aspects their perspectives differed. Methods A three-round modified online Delphi study was carried out with patients and clinicians in seven academic primary care settings from metropolitan, suburban and small-town areas in Quebec, Canada. Patient partners experienced in the mobilization of their experiential knowledge also participated in the study. Following an “open” round, the items elicited were assessed by a combined rating and ranking approach. Items achieving an initial consensus level ≥70% were reassessed and then rank-ordered based on their final scores. Levels of consensus achieved among patients and clinicians were compared using Fisher’s Exact tests. Results Thirty panelists completed the study (9 clinic patients, 7 patient partners and 14 clinicians). Out of 41 organizational aspects generated, six top priorities were shared by patients and clinicians. These related to listening and tailoring care to each patient, provision of personalized information, rapid response in the event of a problem, keeping professional training up-to-date, and relational and informational continuity of care. Statistically significant differences were found between patients’ and clinicians’ perspectives regarding the importance of offering healthy lifestyle and prevention activities at the clinic (lower for patients), timely access to the treating physician (higher for patients), and effective collaboration with specialist physicians (higher for patients). Conclusion Although their views differ on some organizational aspects, patients and clinicians share a small set of top priorities for primary cardiovascular care that may be transferable to other chronic diseases. These top priorities should remain a central focus of clinical settings, alongside other primary care reform goals.

Abstract Background Patient participation in decision-making has become a hallmark of responsive healthcare systems. Cancer networks in many countries have committed to involving people living with and beyond cancer (PLC) at multiple levels. However, PLC participation in network governance remains highly variable for reasons that are poorly understood. This study aims to share lessons learned regarding mechanisms that enable PLC participation in cancer network governance. Methods This multiple case study, using a qualitative approach in a natural setting, was conducted over six years in three local cancer networks within the larger national cancer network in Quebec (Canada), where PLC participation is prescribed by the Cancer Directorate. Data were collected from multiple sources, including individual and focus group interviews (n = 89) with policymakers, managers, clinicians and PLC involved in national and local cancer governance committees. These data were triangulated and iteratively analysed according to a framework based on functions of collaborative governance in the network context. Results We identify three main mechanisms that enable PLC participation in cancer network governance: (1) consistent emphasis on patient-centred care as a network objective; (2) flexibility, time and support to translate mandated PLC representation into meaningful participation; and (3) recognition of the distinct knowledge of PLC in decision-making. The shared vision of person-centred care facilitates PLC participation. The quality of participation improves through changes in how committee meetings are conducted, and through the establishment of a national committee where PLC can pool their experience, develop skills and establish a common voice on priority issues. PLC knowledge is especially valued around particular challenges such as designing integrated care trajectories and overcoming barriers to accessing care. These three mechanisms interact to enable PLC participation in governance and are activated to varying extents in each local network. Conclusions This study reveals that mandating PLC representation on governance structures is a powerful context element enabling participation, but that it also delineates which governance functions are open to influence from PLC participation. While the activation of mechanisms is context dependent, the insights from this study in Quebec are transferable to cancer networks in other jurisdictions seeking to embed PLC participation in decision-making.

Abstract Context Partnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective To co‐construct a tool for measuring the degree of partnership between patients and HCPs. Design The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients’ and HCPs’ viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions The CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings. Patient or Public Contribution Patients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

BackgroundPeople with COVID-19 are instructed to self-isolate at home. During self-isolation, they may experience anxiety and insufficient care. Patient portals can allow patients to self-monitor and remotely share their health status with health care professionals, but little data are available on their feasibility. ObjectiveThis paper presents the protocol of the Opal-COVID Study. Its objectives are to assess the implementation of the Opal patient portal for distance monitoring of self-isolating patients with COVID-19, identify influences on the intervention’s implementation, and describe service and patient outcomes of this intervention. MethodsThis mixed methods pilot study aims to recruit 50 patient participants with COVID-19 tested at the McGill University Health Centre (Montreal, Canada) for 14 days of follow-up. With access to an existing patient portal through a smartphone app, patients will complete a daily self-assessment of symptoms, vital signs, and mental health monitored by a nurse, and receive teleconsultations as needed. Study questionnaires will be administered to collect data on sociodemographic characteristics, medical background, implementation outcomes (acceptability, usability, and respondent burden), and patient satisfaction. Coordinator logbook entries will inform on feasibility outcomes, namely, on recruitment, retention, and fidelity, as well as on the frequency and nature of contacts with health care professionals. The statistical analyses for objectives 1 (implementation outcomes), 3 (service outcomes), and 4 (patient outcomes) will evaluate the effects of time and sociodemographic characteristics on the outcomes. For objectives 1 (implementation outcomes) and 4 (patient outcomes), the statistical analyses will also examine the attainment of predefined success thresholds. As for the qualitative analyses, for objective 2 (influences on implementation), semistructured qualitative interviews will be conducted with 4 groups of stakeholders (ie, patient participants, health care professionals, technology developers, and study administrators) and submitted for content analysis, guided by the Consolidated Framework for Implementation Research to help identify barriers to and facilitators of implementation. For objective 3 (service outcomes), reasons for contacting health care professionals through Opal will also be submitted for content analysis. ResultsBetween December 2020 and March 2021, a total of 51 patient participants were recruited. Qualitative interviews were conducted with 39 stakeholders from April to September 2021. Delays were experienced owing to measures taken at the McGill University Health Centre to address COVID-19. The quantitative and qualitative analyses began in May 2022. As of June 2022, a total of 2 manuscripts (on the implementation and the patient outcomes) were being prepared, and 3 conference presentations had been given on the study’s methods. ConclusionsThis protocol is designed to generate multidisciplinary knowledge on the implementation of a patient portal–based COVID-19 care intervention and will lead to a comprehensive understanding of feasibility, stakeholder experience, and influences on implementation that may prove useful for scaling up similar interventions. Trial RegistrationClinicalTrials.gov NCT04978233; https://clinicaltrials.gov/ct2/show/NCT04978233 International Registered Report Identifier (IRRID)DERR1-10.2196/35760

Objective We aimed to explore the factors that influence medical students’ intention to integrate dHealth technologies in their practice and analyze the influence of the COVID-19 pandemic on their perceptions and intention. Methods We conducted a two-phased survey study at the University of Montreal's medical school in Canada. The study population consisted of 1367 medical students. The survey questionnaire was administered in two phases, that is, an initial survey (t 0 ) in February 2020, before the Covid-19 pandemic, and a replication survey (t 1 ) in January 2021, during the pandemic. Component-based structural equation modeling (SEM) was used to test seven research hypotheses. Results A total of 184 students responded to the survey at t 0 (13%), whereas 138 responded to the survey at t 1 (10%). Findings reveal that students, especially those who are in their preclinical years, had little occasion to experiment with dHealth technologies during their degree. This lack of exposure may explain why a vast majority felt that dHealth should be integrated into medical education. Most respondents declared an intention to integrate dHealth, including AI-based tools, into their future medical practice. One of the most salient differences observed between t 0 and t 1 brings telemedicine to the forefront of medical education. SEM results confirm the explanatory power of the proposed research model. Conclusions The present study unveils the specific dHealth technologies that could be integrated into existing medical curricula. Formal training would increase students’ competencies with these technologies which, in turn, could ease their adoption and effective use in their practice.

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.

Abstract Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

Multidisciplinary teams encounter many challenges that can lead to higher levels of distress and burnout. This trend is acutely prevalent among multidisciplinary cancer care teams who frequently contend with increased task complexity and numbers of patients. Resilience is emerging as a critical resource that may optimize team members’ psychological health and wellbeing, work efficiency, and organizational agility, while reducing burnout. Accordingly, the proposed study aims to implement and evaluate a promising participatory interventional approach that fosters team resilience. Specifically, the effects of the intervention on participating team members will be compared to a control group of non-participating team members. This intervention’s core components include skills training, patient-centered meetings, talking spaces, and an agile problem-solving approach. The proposed study also seeks to determine whether enhanced resilience improves team mental health status and organizational outcomes. A participatory interventional approach will be implemented and assessed at three-time intervals [i.e., pre-intervention deployment (N = 375), 12 months post-deployment (N = 236), and 24 months post-deployment (N = 146)] across five cancer care teams in three Quebec healthcare institutions. A mixed methods design will be used that includes observations, semi-structured interviews, focus groups, and self-report questionnaires. Direct observation will document team functioning and structural resources (e.g., meetings, conflict management, and leadership). Semi-structured interviews will explore participants’ experience with activities related to the participatory interventional approach, its perceived benefits and potential challenges. Focus groups will explore participants’ perceptions of their team’s resilience and the effectiveness of the intervention. Questionnaires will assess support, recognition, empowerment, organizational justice, individual resilience, psychological safety, work climate, team resilience, workplace burnout, engagement, quality of work life, wellbeing, and organizational citizenship behaviors, and sociodemographic variables. Moreover, objective measures including absenteeism and staff turnover will be obtained via human resource records. Structural equation modeling will be used to test the study’s hypotheses. The proposed protocol and related findings will provide stakeholders with quantitative and qualitative data concerning a participatory interventional approach to optimize team effectiveness. It will also identify critical factors implicated in favorable organizational outcomes in connection with multidisciplinary cancer care teams. Expected results and future directions are also presented herein.

Objective Assess adherence to the Diabetes Clinical Practice Guidelines (CPG) for the Prevention and Treatment of Cardiovascular Disease (CVD) in Family Medicine Groups (FMG) in Quebec.Methodology A retrospective cohort was used with patients with diabetes (PWD) and/or CVD, enrolled in a FMG and the Public Prescription Drug Plan (PPDP) between 2017 and 2020.Results Six adjusted indicators (gender and age) for the management of CVD in PWD aged 50 and over and enrolled in a FMG and the PPDP were calculated. In 2019-2020, among PWD with CVD, 82.0% were taking a statin, 71.9% were taking an antiplatelet, 66.5% were taking an angiotensin receptor (ARB) blocker or angiotensin-converting enzyme (ACE) inhibitor, and 25.5% were taking cardiac-protection therapies [ sodium/glucose cotransporter 2 (SGLT-2), Glucagon like peptide antagonist (GLP-1)]. Among PWD for 15 years, 50.4% take a statin, while in the absence of CVD, 36.1% take an antiplatelet.Conclusion The prescriptions for statin, antiplatelet and ACE/ARB appear in accordance with the CPG and stable from 2017 to 2020. Prescription of antiplatelet in primary prevention was declining between and SGLT-2/GLP-1 were increasing from 2017 to 2020, which is consistent with the recommendations from Diabetes Canada CPG.[1]

BackgroundThe use of social robots as innovative therapeutic tools has been increasingly explored in recent years in an effort to address the growing need for alternative intervention modalities in mental health care. ObjectiveThe aim of this scoping review was to identify and describe social robot interventions in mental health facilities and to highlight their outcomes as well as the barriers and facilitators to their implementation. MethodsA scoping review of the literature published since 2015 was conducted using the Arksey and O’Malley’s framework. The MEDLINE, Embase, Cochrane Central Register of Controlled Trials, and PsycINFO databases were searched, and 2239 papers were retrieved. The papers included were primary empirical studies published in peer-reviewed literature. Eligible studies were set in mental health facilities and they included participants with a known mental health disorder. The methodological quality of the included papers was also assessed using the Mixed Methods Appraisal Tool. ResultsA total of 30 papers met the eligibility criteria for this review. Studies involved participants with dementia, cognitive impairment, schizophrenia, depression, autism spectrum disorder, attention-deficit hyperactivity disorder, and an intellectual disability. The outcomes studied included engagement, social interaction, emotional state, agitation, behavior, and quality of life. ConclusionsThe methodological weaknesses of the studies conducted this far and the lack of diversity in the conditions studied limit the generalizability of the results. However, despite the presence of certain barriers to their implementation (eg, technical problems, unsuitable environment, staff resistance), social robot interventions generally show positive effects on patients with mental health disorders. Studies of stronger methodological quality are needed to further understand the benefits and the place of social robots in mental health care.

For many cancer survivors, post-treatment challenges are predominantly related to their personal and social lives. These challenges are part of an experiential learning process linked to a survivor’s identity, their desire to preserve independence, their social roles, and responsibilities along with a return to their normal lives. We used interpretive description to describe the experiential learning process of cancer survivors as they recover post-treatment. Data from five group discussions with 27 participants were combined with data from 9 in-depth individual interviews that examined post-treatment challenges. Through an iterative qualitative analysis, we uncovered 3 experiential learning pathways. Narrative vignettes are used to portray and highlight learning involved in accepting loss, asking for help, and rebuilding authentic social networks. Experiential learning shares recognizable features among individuals identified as milestones. These lead to a greater understanding of how cancer survivors acquire a new sense of self and recover their lives post-treatment.

ContextDuring 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.ObjectivesTo 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.MethodologyThis 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.ResultsFrom 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.ConclusionOur 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.

BackgroundCancer is a leading cause of disease burden worldwide and the first cause of mortality in Canada with 30.2% of deaths attributable to cancer. Given aging of the population and the improvement of prevention and treatment protocols, the number of cancer survivors is steadily increasing. These individuals have unique physical and mental health needs some of which can be addressed by integrating physical activity promotion into ongoing and long-term care. Despite the benefits of being active, delivery of PA programs for cancer patients in both clinical and community settings remains challenging. This knowledge-to-action protocol-called Kiné-Onco-aims to develop a practice guideline for the delivery, implementation, and scaling-up of cancer-specific physical activity promotion programs and services in clinical and community settings located in Québec, Canada.MethodThe Kiné-Onco project involves knowledge synthesis of scientific and grey literature to establish the benefits and added value of physical activity for cancer patients and survivors, describes current practices in delivering physical activity programs, analyses quantitative data from electronic health records (EHR) of patients participating in a novel hospital-based physical activity program, collects and analyses qualitative data from patients and healthcare providers interviews about lived experience, facilitators, and barriers to physical activity promotion, outlines deliberative workshops among multidisciplinary team members to develop implementation guidelines for physical activity promotion, and summarizes a variety of knowledge transfer and exchange activities to disseminate the practice guidelines.DiscussionThis paper describes the protocol for a knowledge-to-action project aimed at producing and sharing actionable evidence. Our aim is that physical activity promotion programs and services be scaled up in such a way as to successfully integrate physical activity promotion throughout cancer treatment and survivorship in order to improve the physical and mental health of the growing population of individuals having received a cancer diagnosis.

Since the beginning of the COVID-19 pandemic, numerous studies have been conducted to identify interventions that could contribute to alleviating the burden it has caused. The Institut national d'excellence en santé et en services sociaux (INESSS) has played a key role in informing the government of Québec regarding the evaluation of specific pandemic-related interventions. This process took place in a context characterized by a sense of urgency to assess and recommend potential interventions that could save lives and reduce the effects of the disease on populations and healthcare systems, which increased the pressure on the regulatory agencies leading these evaluations. While some of the interventions examined were considered promising, results from COVID-19 studies often led to uncertainty regarding their efficacy or safety. Regulatory agencies evaluating the value of promising interventions thus face challenges in deciding whether these should be made available to the population, particularly when assessing their benefit-risk balance. To shed light on these challenges, we identified underlying ethical considerations that can influence such an assessment. A rapid literature review was conducted in February 2021, to identify the main challenges associated with the benefit-risk balance assessment of promising interventions. To reinforce our understanding of the underlying ethical considerations, we initiated a discussion among various social actors involved in critical thinking surrounding the evaluation of promising interventions, including ethicists, clinicians and researchers involved in clinical or public health practice, as well as patients and citizens. This discussion allowed us to create a space for exchange and mutual understanding among these various actors who contributed equally to the identification of ethical considerations. The knowledge and perspectives stemming from the scientific literature and those consulted were integrated in a common reflection on these ethical considerations. This allowed patients and citizens, directly affected by the evaluation of pandemic-related interventions and the resulting social choices, to contribute to the identification of the relevant ethical considerations. It also allowed for reflection on the responsibilities of the various actors involved in the development, evaluation, and distribution of promising interventions in a setting of urgency and uncertainty, such as that brought about by the COVID-19 pandemic.

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

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

Abstract Context The National Institute of Excellence in Health and Social Services (INESSS), which functions as the Québec health technology assessment (HTA) agency, tested a new way to engage patients along with health‐care professionals in the co‐construction of recommendations regarding implantable cardioverter‐defibrillator replacement. Objective The objective of this article was to describe the process of co‐construction of recommendations and to propose methods of building best practices for patient involvement (PI) in HTA. Design Throughout the process, documents were collected and participant observations were made. Individual interviews were conducted with patients, health‐care professionals and the INESSS scientific team, from January to March 2018. Results Three committees were established: an expert patient committee to reflect on patient experience literature; an expert health professional committee to reflect on medical literature; and a co‐construction committee through which both patients and health‐care professionals contributed to develop the recommendations. The expert patients validated and contextualized a literature review produced by the scientific team. This allowed the scientists to consider aspects related to the patient experience and to integrate the feedback from patients into HTA recommendations. The most important factor contributing to a positive PI experience was the structured methodology for selecting patient participants, and a key factor that inhibited the process was a lack of training in PI on the part of the scientific team. Conclusions This experience demonstrates that it is possible to co‐construct recommendations, even for technically complex HTA subjects, through a more democratic process than usual which led to more patient‐focused guidance.