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.

Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

Training the Next Generation of Diabetes Researchers: Evaluation of the Diabetes Action Canada Training and Mentoring Program.

BACKGROUND: The Diabetes Action Canada Training and Mentoring (DAC-TM) Program launched in June 2017, with the goal of building capacity in the next generation of diabetes researchers in Canada in patient-oriented research (POR). METHODS: We conducted a program evaluation of the DAC-TM program using a sequential, mixed-methods research design. RESULTS: Our analysis of 82 surveys and 22 in-depth interviews from a wide range of DAC-TM Program stakeholders revealed consistent patterns in experience with the program. The training sessions were perceived to be well-organized, convenient educational opportunities to gain new knowledge about POR and become integrated into a community of practice of POR researchers who study diabetes and its complications in Canada. The content of the training was perceived to be useful and relevant to participants, although improvements could be made to help address the training needs of the broader DAC community. There is broad support for and appreciation of the mentorship awards, which were perceived to be appropriately targeted to early-career investigators. The mentor-mentee relationships were perceived to be positive, productive and career-advancing overall, but could benefit from a more strategic design and promote better connectivity to foster mentor-mentee relationships. In addition, feedback about opportunities to network and forge new connections was mixed and represents another opportunity for improvement to strengthen capacity building. CONCLUSIONS: Findings from this formative evaluation study show key strengths and opportunities to improve the DAC-TM Program, which can be used to help enhance its function and promote its long-term sustainability.

Exploring the Lived Experience of Diabetes Through an Intersectional Lens: A Qualitative Study of Adults With Type 1 and Type 2 Diabetes.

BACKGROUND: Our aim in this study was to explore the lived experience of adults living with type 1 and type 2 diabetes through an intersectional sex- and gender-based analysis plus lens. METHODS: Qualitative interviews with 15 adults (9 women, 6 men) were conducted in February and March 2021. Interviews were recorded, transcribed and analyzed for semantic and latent themes noting differences in participants' accounts of living with diabetes by gender, age, race and ethnicity, type of diabetes and other key demographics. RESULTS: Participants' experiences differed substantively by gender, age and racialization. "Resilience" was identified as a central feature in participants' lives. Factors that contributed to resilience included supportive relationships, a feeling of agency and social acceptance; confounding factors included unsupportive relationships, a lack of agency and experiences of stigma, discrimination and microaggressions. CONCLUSIONS: Lived experiences of diabetes can best be understood through an intersectional lens that considers peoples' diverse socioeconomic locations and identities. Those who experience discrimination, including women, older individuals and racialized people, may also experience the compounding effects of multiple marginalization, requiring greater investment in factors that contribute to their resilience. Considering the varied needs of diverse individuals should be integrated into routine diabetes care.

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.

Integration of sex and gender in a continuing professional development course on diabetes and depression: a mixed methods feasibility study.

OBJECTIVES: Assess the feasibility and impact of a continuous professional development (CPD) course on type 2 diabetes and depression on health professionals' intention to include sex and gender considerations in patient care. DESIGN AND SETTING: In collaboration with CPD organisations and patient-partners, we conducted a mixed-methods feasibility controlled trial with postintervention measures in three Canadian provinces. PARTICIPANTS: Of 178 eligible health professionals, 127 completed questionnaires and 67 participated in semistructured group discussions. INTERVENTION AND COMPARATOR: An interactive 1 hour CPD course, codesigned with patient-partners, on diabetes and depression that included sex and gender considerations (innovation) was compared with a similar course that did not include them (comparator). OUTCOMES: Feasibility of recruitment and retention of CPD organisations and patient-partners throughout the study; adherence to planned activities; health professionals' intention to include sex and gender considerations in patient care as measured by the CPD-Reaction questionnaire; and barriers and facilitators using the Theoretical Domains Framework. RESULTS: All recruited CPD organisations and patient-partners remained engaged throughout the study. All planned CPD courses occurred. Overall, 71% of eligible health professionals participated (63% under 44 years old; 79.5% women; 67.7% practising in French; 66.9% practising in Quebec; 78.8% in urban practice). After training, mean intention scores for the innovation (n=49) and control groups (n=78) were 5.65±0.19 and 5.19±0.15, respectively. Mean difference was -0.47 (CI -0.95 to 0.01; p=0.06). Adjusted for age, gender and practice settings, mean difference was -0.57 (CI -1.09 to -0.05; p=0.03). We identified eight theoretical domains related to barriers and six related to facilitators for providing sex-adapted and gender-adapted diabetes and depression care. CONCLUSIONS: CPD training on diabetes and depression that includes sex and gender considerations is feasible and, compared with CPD training that does not, may prompt health professionals to modify their care. Addressing identified barriers and facilitators could increase intention. TRIAL REGISTRATION NUMBER: NCT03928132 with ClinicalTrials.gov; Post-results.

Better understanding care transitions of adults with complex health and social care needs: a study protocol.

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.

Planning, operationalizing, and evaluating patient partners' engagement in primary care research: a logic model.

Context. There is growing evidence supporting patients' engagement (PE) in primary care research to improve the quality, relevance, and uptake of research. However, guidance is still needed to plan and operationalize this engagement during the research process. Objective. To develop a logic model illustrating empirically the causal links between context, resources, activities, and expected outcomes of PE in an implementation research program in primary care. Study design. Instrumental case study. Setting. A research program (PriCARE) aiming to implement and evaluate a case management intervention (CMI) in primary care clinics across five provinces in Canada. Population studied. Research team members. Methods. Data collection. Participant observation and in-depth interviews (n=22) conducted by two independent research assistants with research team members: principal investigators (n=5); co-investigators (n=2); research coordinators and assistants (n=8); and patient partners (n=7). Analysis. Deductive thematic analysis using components of the logic model as coding categories. All data were coded using NVivo 12 software. Data were reduced and organized in a first logic model version. Team meetings helped to refine the logic model. The final version was validated by all research team members. Results. The logic model provides an empirical illustration of the relationship between context, resources, activities, and expected outcomes for PE. Mobilized resources (human, financial, organizational, and communicational) allow research team members to be involved in many activities related to PE: recruitment, training, and support of patient partners; development of a governance structure; participation in research activities; agreement on decision-making processes; training and support of clinicians; development of tools for patients' involvement in the CMI. These activities lead to the following benefits for health research: improved communication amongst all team members, results and knowledge translation; development of a PE culture; capacity building; democratization of health research; and for healthcare: improved implementation of the intervention; improved patient engagement in their care; better health outcomes and resource utilization; support of decision-makers and clinicians; and better practices. Conclusions. The logic model may be useful for the planning, operationalization and evaluation of PPE in primary care research programs.

Patient engagement works: Patient and researcher experiences of patient partnership in primary healthcare research.

Context: Health researchers are increasingly engaging patients and their families as partners in the research process, from inception to knowledge translation. The trend toward 'patient-oriented' research is encouraged by a growing view that studies which integrate the patient perspective will make better use of resources to produce more relevant evidence that can be more easily translated to clinical settings. While there is an emerging literature on best practices, challenges, and learnings related to patient engagement (PE), few studies consider the experiences of patient partners (PP) and researchers in the same project. This presentation will present PP and researcher experiences of PE, highlighting important similarities and differences and proposing recommendations. Objectives: To characterize PE experience from the perspective of researchers and PP working together on the same research program, PriCARE; to identify successes and challenges; to ascertain contributions of PE in health research. Study Design: Qualitative. Setting or Dataset: This study was conducted within the larger 5-province PriCARE study examining a nurse-led case management intervention for primary care patients with complex needs. Population studied: 22 members of the study team (7 PP, 8 coordinators, 2 co-investigators, 5 principal investigators). Methods: Data collection: In-depth interviews using guides co-created by researchers and PP covering topics such as PE-related training and knowledge, and reflections on PE processes and impact. Research assistants external to the PriCARE study conducted interviews, transcribed researcher interviews, and generated a summary of PP interviews. Analysis: Data were analyzed thematically using a coding framework that was co-developed with PP. Outcome Measures: Researcher and patient experiences of PE, PP contributions to health research. Results: All team members need PE training at the beginning of and throughout the research process. Evolving trust and flexibility helped team members to navigate different experiences and priorities. PP make integral contributions to study and instrument design, data analysis, and knowledge translation. Clear expectations about the degree and nature of PE and team members' roles are critical. Conclusions: Meaningful PE requires patient-researcher partnership and clear expectation setting at the outset and throughout the research process, and ongoing flexibility to adapt.