Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study.

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.

Case Management Programs for Improving Integrated Care for Frequent Users of Healthcare Services: An Implementation Analysis.

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.

Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.

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.

Case management programs for people with complex needs: Towards better engagement of community pharmacies and community-based organisations.

INTRODUCTION: The objectives of this study were 1) to describe how case management programs engaged community pharmacies and community-based organisations in a perspective of integrated care for people with complex needs, and 2) to identify enablers, barriers and potential strategies for this engagement. METHODS: Using a descriptive qualitative design, individual interviews and focus groups with patients, healthcare providers and managers were analysed according to a mixed thematic analysis based on a deductive (Rainbow Model of Integrated Care) and an inductive approach. RESULTS AND DISCUSSION: Participants highlighted the individualized service plan as a significant tool to foster a shared person-focused vision of care, information exchanges and concerted efforts. Openness to collaboration was also considered as an enabler for community stakeholders' engagement. The lack of recognition of community-based organisations by certain providers and the time required to participate in individualized service plans were outlined as barriers to professional integration. Limited opportunities for community stakeholders to be involved in decision-making within case management programs were reported as another constraint to their engagement. Cultural differences between organisations regarding the focus of the intervention (psychosocial vs healthcare needs) and differences in bureaucratic structures and funding mechanisms may negatively affect community stakeholders' engagement. Formal consultation mechanisms and improvement of communication channels between healthcare providers and community stakeholders were suggested as ways to overcome these barriers. CONCLUSION: Efforts to improve care integration in case management programs should be directed toward the recognition of community stakeholders as co-producers of care and co-builders of social policies across the entire care continuum for people with complex needs.

Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research.

The case study design is particularly useful for implementation analysis of complex health care innovations in primary care that can be influenced by the context of dynamic environments. Case studies may be combined with participatory approaches where academics conduct joint research with nonacademic stakeholders, to foster translation of findings results into practice. The aim of this article is to clarify epistemological and methodological considerations of case studies with a participatory approach. It also aims to propose best practice recommendations when using this case study approach. We distinguish between the participatory case study with full co-construction and co-governance, and the case study with a participatory approach whereby stakeholders are consulted in certain phases of the research. We then compare the epistemological posture of 3 prominent case study methodologists, Yin, Stake, and Merriam, to present the epistemological posture of case studies with a participatory approach. The relevance, applications, and procedures of a case study with a participatory approach methodology are illustrated through a concrete example of a primary care research program (PriCARE). We propose 12 steps for designing and conducting a case study with a participatory approach that may help guide researchers in the implementation analysis of complex health care innovations in primary care.

Theoretical analysis of policies to improve the recruitment and retention of rural physicians.

The lack of success in resolving the shortage of rural physicians in Organisation for Economic Cooperation and Development countries has been attributed to the weakness of implemented policies. This research examines the theoretical plausibility of policies to improve the recruitment and retention of rural physicians, first, by modelling the policies; and then, by describing how they might achieve their intended outcome based on a theoretical analysis. A theory-driven method relying on published research and expert analysis is used. A conceptual model is created to represent the policies and their underlying assumptions. Then, the functional mechanism of the policies is defined. This research demonstrates that financial, educational and tailored interventions might improve rural physician recruitment and retention, but that regulatory interventions are unlikely to do this. The majority of the policies implemented in Organisation for Economic Cooperation and Development countries are therefore theoretically plausible.

Protocol for a mixed-method analysis of implementation of case management in primary care for frequent users of healthcare services with chronic diseases and complex care needs.

INTRODUCTION: Case management (CM) in a primary care setting is a promising approach to integrating and improving healthcare services and outcomes for patients with chronic conditions and complex care needs who frequently use healthcare services. Despite evidence supporting CM and interest in implementing it in Canada, little is known about how to do this. This research aims to identify the barriers and facilitators to the implementation of a CM intervention in different primary care contexts (objective 1) and to explain the influence of the clinical context on the degree of implementation (objective 2) and on the outcomes of the intervention (objective 3). METHODS AND ANALYSIS: A multiple-case embedded mixed-methods study will be conducted on CM implemented in ten primary care clinics across five Canadian provinces. Each clinic will represent a subunit of analysis, detailed through a case history. Cases will be compared and contrasted using multiple analytical approaches. Qualitative data (objectives 1 and 2) from individual semistructured interviews (n=130), focus group discussions (n=20) and participant observation of each clinic (36 hours) will be compared and integrated with quantitative (objective 3) clinical data on services use (n=300) and patient questionnaires (n=300). An evaluation of intervention fidelity will be integrated into the data analysis. ETHICS AND DISSEMINATION: This project received approval from the CIUSSS de l'Estrie - CHUS Research Ethic Board (project number MP-31-2019-2830). Results will provide the opportunity to refine the CM intervention and to facilitate effective evaluation, replication and scale-up. This research provides knowledge on how to resp ond to the needs of individuals with chronic conditions and complex care needs in a cost-effective way that improves patient-reported outcomes and healthcare use, while ensuring care team well-being. Dissemination of results is planned and executed based on the needs of various stakeholders involved in the research.

Case Management in Primary Care for Frequent Users of Health Care Services: A Realist Synthesis.

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.

Evaluating complex interventions in real context: Logic analysis of a case management program for frequent users of healthcare services.

Case management programs for frequent users of healthcare services are complex interventions which implementation and application are challenging to evaluate. The aim of this article was to conduct a logic analysis to evaluate a case management program for frequent users of healthcare services. The study proceeded in three phases: 1) establishing causal links between the program's components by the construction of a logic model, 2) developing an integrated framework from a realistic synthesis, and 3) making a new reading of the case management program in regard of the integrated framework. The study demonstrated, on one hand, strengths and weaknesses of the actual case management program, and, on the other hand, how logic analysis can create a constructive dialogue between theory and practice. The evaluative process with decision-makers, clinicians and patients has helped to make connexions between theory, practice, experience and services organization.

Strategic analysis of interventions to reduce physician shortages in rural regions.

INTRODUCTION: Physician shortages in rural regions of OECD countries has led to the development of regulatory, financial, educational and tailored interventions designed to reduce physician shortages. Studies evaluating these interventions report weak or inconclusive results. The objective of this research is to examine the strategic relevance of the interventions by identifying and prioritizing the determinants of physician shortages and analyzing the interventions based on their ability to target the determinants. METHODS: First, the determinants of physician shortages were identified and categorized using Mays et al's 2005 method for reviewing qualitative literature. Second, the determinants were prioritized based on importance, severity and solvability, using Lehmann et al's multilevel categorization of factors affecting attraction and retention. Third, the interventions were analyzed based on their ability to target the determinants through a document analysis as descriptive commentary from a policy analysis perspective. RESULTS: Three individual and 10 contextual (work, rural or international context) determinants of physician shortages were identified. Non-rural background, inadequate training and inadequate incentive structure were prioritized as level 1. Lack of professional support, poor work infrastructure and personal interests were prioritized as level 2. Poor rural infrastructure, inadequate supply planning and cultural difference were prioritized as level 3. Non-minority background, geography and climate, global migration and aging population were prioritized as level 4. Establishing rural medical schools targets the greatest number of priority determinants, followed by financial interventions targeting practicing physicians and non-traditional health services delivery strategies. Curriculum changes, professional support strategies, selective admission to medical schools, financially targeting student physicians and coercive regulatory measures follow. Community support strategies target the fewest number of determinants and trickle-down economic regulation targets none. CONCLUSION: Strategic analysis demonstrates that most interventions designed to reduce physician shortages in rural regions are strategically relevant because they address the priority determinants of physician shortages. A link is established between the determinants of physician shortages and the interventions, thereby addressing an important concern expressed in the literature. An original contribution is made to health human resources literature by relying on established theoretical frameworks to achieve a strategic analysis of the interventions.

Characteristics of self-management among patients with complex health needs: a thematic analysis review.

OBJECTIVE: There is a gap of knowledge among healthcare providers on characteristics of self-management among patients with chronic diseases and complex healthcare needs. Consequently, the objective of this paper was to identify characteristics of self-management among patients with chronic diseases and complex healthcare needs. DESIGN: Thematic analysis review of the literature. METHODS: We developed search strategies for the MEDLINE and CINAHL databases, covering the January 2000-October 2018 period. All articles in English or French addressing self-management among an adult clientele (18 years and older) with complex healthcare needs (multimorbidity, vulnerability, complexity and frequent use of health services) were included. Studies that addressed self-management of a single disease or that did not have any notion of complexity or vulnerability were excluded. A mixed thematic analysis, deductive and inductive, was performed by three evaluators as described by Mileset al. RESULTS: Twenty-one articles were included. Patients with complex healthcare needs present specific features related to self-management that can be exacerbated by deprived socioeconomic conditions. These patients must often prioritise care based on one dominant condition. They are at risk for depression, psychological distress and low self-efficacy, as well as for receiving contradictory information from healthcare providers. However, the knowledge and experiences acquired in the past in relation to their condition may help them improve their self-management skills. CONCLUSIONS: This review identifies challenges to self-management for patients with complex healthcare needs, which are exacerbated in contexts of socioeconomic insecurity and proposes strategies to help healthcare providers better adapt their self-management support interventions to meet the specific needs of this vulnerable clientele.