Rationalizing the Influence of Co-Design on Distress, Clinical Decision-Making and Disease Self-Management of Cancer Patients-as-Partners: A Quasi-Experimental Study.

INTRODUCTION: Cancer is regarded as a major worldwide burden. Patient distress has been linked to disease progression. Studies show that engagement strategies affect clinical decision-making and patient outcomes. The optimal engagement method is a partnership that integrates the patient's expertise into the comprehensive co-design of the healthcare system. OBJECTIVES: This is the first study to investigate cancer patient-as-partner experience and its impact on distress levels, decision-making and self-management. METHODS: It is a quantitative and quasi-experimental study that adopted a partnership committee at a Lebanese hospital. A stratified random sampling approach was used, and data were collected by self-administered questionnaires. We utilized the standardized distress thermometer and PPEET. RESULTS: We recruited 100 patient partners. Cancer patients-as-partners had optimal engagement experience in QI projects (mean = 4; SD = 0.4). The main partnership benefit was improved hospitalization experience (49%). Almost half of PP reported no challenges faced (49%). Recommendations for improvement were training (19%), team dynamics management (12%) and proper time allocation (7%). The distress level post-partnership was significantly reduced (t = 12.57, p < 0.0001). This study highlights the importance of partnership and its ability to influence shared decision-making preference [χ2(2) = 13.81, p = 0.025] and self-management practices [F(3, 11.87) = 7.294, p = 0.005]. CONCLUSION: Research findings suggest that partners from disadvantaged groups can have optimal partnership experience. A partnership model of care can shape the healthcare system into a people-oriented culture. Further research is needed to explore diverse PP engagement methodologies and their effect on organizational development. PATIENT OR PUBLIC CONTRIBUTION: Patients and family members were engaged in the co-design of the study methodology, especially the modification of a research instrument. Patient partners with lived experience were involved in the patient partnership committee as core members to improve healthcare system design and evaluation.

Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey.

INTRODUCTION: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. METHODS: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis. RESULTS: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. CONCLUSIONS: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. PATIENT CONTRIBUTION: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.

Towards a New Integrated Model for Taking Into Account the Experiential Knowledge of People With Chronic Diseases, Integrating Mediation, Therapeutic Education and Partnership: The Expanded Chronic Care Patient-Professional Partnership Model.

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.

Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals.

PURPOSE: Many health professions education programs involve people with lived experience as expert speakers. Such presentations may help learners better understand the realities of living with chronic illness or experiencing an acute health problem. However, lectures from only one or a small number of people may not adequately illustrate the perspectives and experiences of a diverse patient cohort. Additionally, logistical constraints such as public health restrictions or travel barriers may impede in-person presentations, particularly among people who have more restrictions on their time. Health professions education programs may benefit from understanding the potential effects of online patient-led presentations with a diverse set of speakers. We aimed to explore whether patient-led online learning modules about diabetes care would influence learners' responses to clinical scenarios and to collect learners' feedback about the modules. METHOD: This within-subjects randomized experiment involved 26 third-year medical students at Université Laval in Quebec, Canada. Participation in the experiment was an optional component within a required course. Prior to the intervention, participating learners responded to three clinical scenarios randomly selected from a set of six such scenarios. Each participant responded to the other three scenarios after the intervention. The intervention consisted of patient-led online learning modules incorporating segments of narratives from 21 patient partners (11 racialized or Indigenous) describing why and how clinicians could provide patient-centered care. Working with clinical teachers and psychometric experts, we developed a scoring grid based on the biopsychosocial model and set 0.6 as a passing score. Independent evaluators, blinded to whether each response was collected before or after the intervention, then scored learners' responses to scenarios using the grid. We used Fisher's Exact test to compare proportions of passing scores before and after the intervention. RESULTS: Learners' overall percentage of passing scores prior to the intervention was 66%. Following the intervention, the percentage of passing scores was 76% (p = 0.002). Overall, learners expressed appreciation and other positive feedback regarding the patient-led online learning modules. DISCUSSION: Findings from this experiment suggest that learners can learn to provide better patient-centered care by watching patient-led online learning modules created in collaboration with a diversity of patient partners.

A critical and systematic literature review of epistemic justice applied to healthcare: recommendations for a patient partnership approach.

Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone's testimony seriously, imposing one's thoughts, discrediting someone's emotions, or not perceiving someone's testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare.

[Initiation to patient partnership in mental health and psychiatry from initial training onwards]. / Initiation dès la formation initiale au partenariat patient en santé mentale et psychiatrie.

Introducing patient partnership in mental health and psychiatry to initial training is an innovative way of promoting recovery, while at the same time highlighting the undeniable contribution of peer support within healthcare teams, in order to accompany the people concerned. This is why Croix-Rouge Compétence Auvergne-Rhône-Alpes is developing a specific training program for trainees.

An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress.

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.

Patient engagement in health implementation research: A logic model.

INTRODUCTION: Growing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme. METHODS: The Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in-depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members. RESULTS: The Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care. CONCLUSION: The Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes. PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript.

Structuring and organizing interprofessional healthcare in partnership with patients with diabetes: the INterprofessional Management and Education in Diabetes care (INMED) pathway.

Type 2 diabetes is a complex chronic disease that requires ongoing monitoring by an interprofessional team to prevent complications. The INMED (INterprofessional Management and Education in Diabetes) care pathway was developed by our team to optimize primary care services for these patients and their families. The objective of this study is to describe the preliminary results of its adoption and implementation. The INMED care pathway is organized into four axes: (a) continuing professional education, (b) self-management support, (c) case management, and (d) ongoing evaluation of the quality of diabetes care and services. A multiple-case study is underway to document its effects on practice change using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Preliminary results on the adoption and implementation revealed some strengths: (a) regular patient follow-up by the case manager, (b) scheduling of physician appointments when required, and (c) regular screening for risk factors. Barriers were also identified: (a) lack of clear understanding of the case manager role, (b) lack of referrals to team members, and (c) lack of use of the motivational interview approach. The INMED care pathway is being adopted by primary care teams but challenges need to be overcome to improve its reach and effectiveness.

[Health simulation, access to somatic care for people with ASD]. / Simulation en santé et accès aux soins somatiques des personnes présentant un TSA.

The clinical characteristics of people with autism spectrum disorders can make it difficult for them to access care, including treatment and medical imaging examinations. Simulation-based learning can facilitate the performance of a CT scan, as in the case of Irène, who was able to adopt the expected body positions thanks to this intervention.

[Patient partnership: sharing experience in sickle cell vaso-occlusive crisis]. / Partenariat patient : partage d'expérience dans le cas d'une crise vaso-occlusive drépanocytaire.

The patient partnership is a new approach in which the patient, through his knowledge acquired from his experience with the disease, is a stakeholder in decisions about care, the organization of the health system and choices in terms of health policy. A team from the Blois hospital (41) was able to share the experience of a patient partnership during the analysis of a complex medical situation with a young man with sickle cell disease in a vaso-occlusive crisis. She reports here this new and enriching experience.

Prehabilitation in adult patients undergoing surgery: an umbrella review of systematic reviews.

BACKGROUND: The certainty that prehabilitation improves postoperative outcomes is not clear. The objective of this umbrella review (i.e. systematic review of systematic reviews) was to synthesise and evaluate evidence for prehabilitation in improving health, experience, or cost outcomes. METHODS: We performed an umbrella review of prehabilitation systematic reviews. MEDLINE, Embase, Cochrane, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Joanna Briggs Institute's database, and Web of Science were searched (inception to October 20, 2020). We included all systematic reviews of elective, adult patients undergoing surgery and exposed to a prehabilitation intervention, where health, experience, or cost outcomes were reported. Evidence certainty was assessed using Grading of Recommendations Assessment, Development and Evaluation. Primary syntheses of any prehabilitation were stratified by surgery type. RESULTS: From 1412 titles, 55 systematic reviews were included. For patients with cancer undergoing surgery who participate in any prehabilitation, moderate certainty evidence supports improvements in functional recovery. Low to very low certainty evidence supports reductions in complications (mixed, cardiovascular, and cancer surgery), non-home discharge (orthopaedic surgery), and length of stay (mixed, cardiovascular, and cancer surgery). There was low to very low certainty evidence that exercise prehabilitation reduces the risk of complications, non-home discharge, and length of stay. There was low to very low certainty evidence that nutritional prehabilitation reduces risk of complications, mortality, and length of stay. CONCLUSIONS: Low certainty evidence suggests that prehabilitation may improve postoperative outcomes. Future low risk of bias, randomised trials, synthesised using recommended standards, are required to inform practice. Optimal patient selection, intervention design, and intervention duration must also be determined.

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

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

The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol.

BACKGROUND: Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. METHODS/DESIGN: We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients' experience of emotional support throughout their care trajectory. DISCUSSION: This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

How interprofessional teams of students mobilized collaborative practice competencies and the patient partnership approach in a hybrid IPE course.

To develop collaborative competencies of future health and social services professionals, the Université de Montréal (UdeM) offers interprofessional education (IPE) in partnership with patients. To meet the challenges of IPE, UdeM turned to digital tools to enable interprofessional teams of students to collaborate online and face-to-face. The collaborative flipped classroom for IPE with patient partnership is the conceptual framework for the pedagogical method used for this study. It is based on: 1) a competency framework and 2) collaborative learning concept and dimensions. The study aimed to: 1) demonstrate how interprofessional teams of students mobilize framework competencies and care approaches during online and face-to-face collaborative learning activities; and 2) analyze how students collaborate during a hybrid IPE course using a patient partnership approach. Using a qualitative methodology, the contents of the online collaborative journals (OCJs) of 12 interprofessional student teams were analyzed, along with the individual comments (n = 994) of IPE course learners collected through the Interprofessional Team Collaboration questionnaire (n = 321). The results suggest that the course under study enabled teams to collaborate online and face-to-face throughout the term, and indicate that students were better prepared to adopt a patient partnership approach.

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

BACKGROUND: Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS: We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS: We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS: We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

[Terminology of patient engagement for French healthcare organizations]. / Approche terminologique de l'engagement des patients : point de vue d'un établissement de santé français.

BACKGROUND: The establishment of a common pragmatic terminology represents the first step in structuring patient engagement initiatives in healthcare facilities. However, none is currently available in French. As part of the deployment of patient engagement within a French University Hospital Center, we propose a terminology of patient engagement. METHODS: We conducted a scoping review of the international literature that aimed at identifying the main conceptual and terminological frameworks for the engagement of patients, users and citizens in the healthcare system until 2019 in the PubMed and Cairn.info databases for English and French language articles. Additionally, we identified concepts and practices in the leading organizations of countries where this approach was implemented (United States, Canada and especially the province of Quebec, United Kingdom) and completed this approach by close exchanges and reflections with the team that developed the Montreal model. RESULTS: In total, 75 references and Internet resources were consulted. Patient, interaction, patient experience, experiential knowledge, patient engagement, patient partner and its variations as a resource patient, peer-supporter, trainer, researcher and coach have been defined. CONCLUSION: This terminology of patient engagement proposes an initial stabilization of the vocabulary, using a pragmatic approach. This contribution is a first step aiming at promoting the development of a new model of care and more broadly of healthcare system management, involving scientific and experiential knowledge.

Engaging patients as partners in cancer care: An innovative strategy to implement screening for distress?

Patient distress is frequently missed in everyday cancer care, yet can be associated with decreased quality of life and satisfaction with care, as well as increased risk for comorbidity and morbidity. Considered as an aspect of a patient-centred approach, screening for distress is now an international standard of practice and constitutes an accreditation criterion for cancer centers in the USA and Canada. Inspired by existing health partnership models, the Centre Hospitalier de l'Université de Montréal's (CHUM) Integrative Cancer Care Center recruited patients to act as partners during the creation and implementation of its screening for distress program. Patient partner roles in the program included becoming a member of a specialized psychosocial oncology team, contributing to a healthcare professional training program and helping to select tools to detect distress. This paper describes why and how the CHUM cancer care centre developed an innovative screening for distress program, using a patient partnership approach, to better meet the needs of patients with cancer.

Partnering with patients in quality improvement: towards renewed practices for healthcare organization managers?

BACKGROUND: Around the world, many healthcare organizations engage patients as a quality improvement strategy. In Canada, the University of Montreal has developed a model which consists in partnering with patient advisors, providers, and managers in quality improvement. This model was introduced through its Partners in Care Programs tested with several quality improvement teams in Quebec, Canada. Partnering with patients in quality improvement brings about new challenges for healthcare managers. This model is recent, and little is known about how managers contribute to implementing and sustaining it using key practices. METHODS: In-depth multi-level case studies were conducted within two healthcare organizations which have implemented a Partners in Care Program in quality improvement. The longitudinal design of this research enabled us to monitor the implementation of patient partnership initiatives from 2015 to 2017. In total, 38 interviews were carried out with managers at different levels (top-level, mid-level, and front-line) involved in the implementation of Partners in Care Programs. Additionally, seven focus groups were conducted with patients and providers. RESULTS: Our findings show that managers are engaged in four main types of practices: 1-designing the patient partnership approach so that it makes sense to the entire organization; 2-structuring patient partnership to support its deployment and sustainability; 3-managing patient advisor integration in quality improvement to avoid tokenistic involvement; 4-evaluating patient advisor integration to support continuous improvement. Designing and structuring patient partnership are based on typical management practices used to implement change initiatives in healthcare organizations, whereas managing and evaluating patient advisor integration require new daily practices from managers. Our results reveal that managers at all levels, from top to front-line, are concerned with the implementation of patient partnership in quality improvement. CONCLUSION: This research adds empirical support to the evidence regarding daily managerial practices used for implementing patient partnership initiatives in quality improvement and contributes to guiding healthcare organizations and managers when integrating such approaches.