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Background: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim: This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution: Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient‐centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. Aim: Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. Methods: Based on a participatory action research design and the patient engagement framework in the Strategy for Patient‐Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. Results: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six‐step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. Conclusion: This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. Patient or Public Contribution: All patient partners from the PriCARE programme were actively involved in the six‐step approach. They were also involved in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background: Adults with chronic conditions who also suffer from mental health comorbidities and/or social vulnerability require services from many providers across different sectors. They may have complex health and social care needs and experience poorer health indicators and high mortality rates while generating considerable costs to the health and social services system. In response, the literature has stressed the need for a collaborative approach amongst providers to facilitate the care transition process. A better understanding of care transitions is the next step towards the improvement of integrated care models. The aim of the study is to better understand care transitions of adults with complex health and social care needs across community, primary care, and hospital settings, combining the experiences of patients and their families, providers, and health managers.Methods/design: We will conduct a two-phase mixed methods multiple case study (quantitative and qualitative). We will work with six cases in three Canadian provinces, each case being the actual care transitions across community, primary care, and hospital settings. Adult patients with complex needs will be identified by having visited the emergency department at least three times over the previous 12 months. To ensure they have complex needs, they will be invited to complete INTERMED Self-Assessment and invited to enroll if positive. For the quantitative phase, data will be obtained through questionnaires and multi-level regression analyses will be conducted. For the qualitative phase, semi-structured interviews and focus groups will be conducted with patients, family members, care providers, and managers, and thematic analysis will be performed. Quantitative and qualitative results will be compared and then merged.Discussion: This study is one of the first to examine care transitions of adults with complex needs by adopting a comprehensive vision of care transitions and bringing together the experiences of patients and family members, providers, and health managers. By using an integrated knowledge translation approach with key knowledge users, the study's findings have the potential to inform the optimization of integrated care, to positively impact the health of adults with complex needs, and reduce the economic burden to the health and social care systems. [ABSTRACT FROM AUTHOR]

Introduction: Case management programs (CMP) for frequent users of healthcare services presenting complex healthcare needs constitute an effective strategy to improve patient experience of integrated care and to decrease healthcare overuse and cost. This study sought to identify characteristics of these programs, and their implementation contexts, that help to improve patient self-management, experience of integrated care, and healthcare services use. Methods: A mixed methods multiple embedded case study design was conducted, with six CMP implemented in six hospitals of a region of Quebec (Canada). Results: Within-case analysis describes the structural, environmental, organizational, practitioner, patient, and innovation level characteristics of each CMP and their services integration outcomes based on patient experience, self-management and healthcare services use. Cross-case analysis suggests that the skills, leadership and experience of the case manager, providers' access to the individualized services plan, consideration of the needs of the patient and family members, their participation in decision-making, and the self-management approach, impact integrated care and healthcare services use. Conclusion and discussion: This study underscores the necessity of an experienced, knowledgeable and well-trained case manager with interpersonal skills to optimize CMP implementation such that patients are more proactive in their care and their outcomes improve. [ABSTRACT FROM AUTHOR]

Purpose: Case management (CM) is a promising intervention for frequent users of health care services. Our research question was how and under what circumstances does CM in primary care work to improve outcomes among frequent users with chronic conditions?Methods: We conducted a realist synthesis, searching MEDLINE, CINAHL, Embase, and PsycINFO (1996 to September 2017) for articles meeting the following criteria: (1) population: adult frequent users with chronic disease, (2) intervention: CM in a primary care setting with a postintervention evaluation, and (3) primary outcomes: integration of services, health care system use, cost, and patient outcome measures. Academic and gray literature were evaluated for relevance and robustness. Independent reviewers extracted data to identify context, mechanism, and outcome (CMO) configurations. Analysis of CMO configurations allowed for the modification of an initial program theory toward a refined program theory.Results: Of the 9,295 records retrieved, 21 peer-reviewed articles and an additional 89 documents were retained. We evaluated 19 CM interventions and identified 11 CMO configurations. The development of a trusting relationship fostering patient and clinician engagement in the CM intervention was recurrent in many CMO configurations.Conclusion: Our refined program theory proposes that in the context of easy access to an experienced and trusted case manager who provides comprehensive care while maintaining positive interactions with patients, the development of this relationship fosters the engagement of both individuals and yields positive outcomes when the following mechanisms are triggered: patients and clinicians feel supported, respected, accepted, engaged, and committed; and patients feel less anxious, more secure, and empowered to self-manage. [ABSTRACT FROM AUTHOR]

Purpose: Although case management (CM) is increasingly being implemented to address the complex needs of vulnerable clienteles, few studies have examined the patient experience of CM. This study aimed to examine the experience of patients and their family members with care integration as part of a primary care CM intervention. Patients in the study were frequent users of health care services who had chronic diseases.Methods: A descriptive, qualitative approach was conducted involving 25 patients and 8 of their family members. Data were collected through in-depth interviews of the patients and 2 focus groups of family members and were analyzed thematically.Results: While some participants did not fully understand the CM intervention and a few believed that it involved too many appointments, the CM nurses were patients' preferred contact with primary care. The nurses actively involved the patients in developing and carrying out their individualized services plans (ISPs) with other health care partners. Patients felt that their needs were taken into consideration, especially regarding access to the health care system. The case manager facilitated access to information as well as communication and coordination among health care and community partners. This improved communication comforted the patients and nurtured a relationship of trust. Participants were actively involved in decision-making. Their ISPs helped them know where they were going and improved transitions between services.Conclusions: The experience of patients and family members was overall very positive regarding care integration. They reported improved access, communication, coordination, and involvement in decision-making as well as better health care transitions. [ABSTRACT FROM AUTHOR]

Background: Family physicians frequently interact with people affected by chronic diseases, placing them in a privileged position to enable patients to gain control over and improve their health. Soliciting patients' perceptions about how their family physician can help them in this process is an essential step to promoting enabling attitudes among these health professionals. In this study, we aimed to identify family physician enabling attitudes and behaviours from the perspective of patients with chronic diseases. Methods: We conducted a descriptive qualitative study with 30 patients, 35 to 75 years of age presenting at least one common chronic disease, recruited in primary care clinics in two regions of Quebec, Canada. Data were collected through in-depth interviews and were analyzed using thematic analysis. Results: Family physician involvement in a partnership was perceived by participants as the main attribute of enablement. Promoting patient interests in the health care system was also important. Participants considered that having their situation taken into account maximized the impact of their physician's interventions and allowed the legitimization of their feelings. They found their family physician to be in a good position to acknowledge and promote their expertise, and to help them maintain hope. Conclusions: From the patient's perspective, their partnership with their family physician is the most important aspect of enablement [ABSTRACT FROM AUTHOR]