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.

Integrated case management between primary care clinics and hospitals for people with complex needs who frequently use healthcare services in Canada: A multiple-case embedded study.

INTRODUCTION: Case management (CM) is recognized to improve care integration and outcomes of people with complex needs who frequently use healthcare services, but challenges remain regarding interaction between primary care clinics and hospitals. This study aimed to implement and evaluate an integrated CM program for this population where nurses in primary care clinics worked with a hospital case manager. METHODS: A multiple embedded case study was conducted in the Saguenay-Lac-Saint-Jean region (Québec, Canada), in four dyads including a clinic and a hospital. Mixed data collection included, at baseline and 6 months, interviews and focus groups with stakeholders, patient questionnaires (patient experience of integrated care and self-management), and emergency department (ED) visits in the previous 6 months. RESULTS: Integrated CM implementation was optimal when all stakeholders provided collective leadership, and were supportive of the program, particularly the physicians. The 6-month program enabled the observation of positive qualitative outcomes in most clinic-hospital dyads where implementation occurred. Full implementation was associated with improved care integration. DISCUSSION AND CONCLUSION: Integrated CM between primary care clinics and hospitals is a promising innovation to improve care integration for people with complex needs who frequently use healthcare services. Collective leadership and physicians' buy-in to integrated CM are important to foster the implementation.

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.

How to Better Integrate Social Determinants of Health into Primary Healthcare: Various Stakeholders' Perspectives.

This paper aims to identify challenges and opportunities related to the integration of social determinants of health (SDH) into primary healthcare at an international symposium in Orford, Quebec, Canada. A descriptive qualitative approach was conducted. Three focus groups on different topics were led by international facilitators. Two research team members took notes during the focus groups. All the material was analyzed using a thematic analysis according to an inductive method. Many challenges were identified, leading to the identification of potential opportunities: integrate the concept of SDH in all phases of the training curriculum for health professionals to foster interprofessional and intersectoral collaboration and sociocultural skills; organize healthcare for better outreach to vulnerable populations; organize local and regional committees to develop management frameworks to produce and use territory-specific data; develop dashboards for primary healthcare providers describing the composition of their territory's population; work collaboratively, rallying primary healthcare providers, community organization delegates, patient partners, citizens, and municipality representatives around common projects. Discussions prompted new directions for further primary healthcare research, among which are building on best practices in the literature and in the field, and engaging various stakeholders in research, including vulnerable populations, while focusing on patient experience.

Measuring Health Literacy in Primary Healthcare: Adaptation and Validation of a French-Language Version of the Brief Health Literacy Screening among Patients with Chronic Conditions Seen in Primary Care.

BACKGROUND: The Brief Health Literacy Screening (BHLS) is a short self-report instrument developed to identify patients with inadequate health literacy. This study aimed to translate the BHLS into French Canadian (BHLS-FCv) and to evaluate its psychometric properties among patients with chronic conditions in primary care. METHODS: The BHLS was translated into French using the Hawkins and Osborne's method. Content validity was evaluated through cognitive interviews. A validation study of the BHLS-FCv was conducted in two primary care clinics in the province of Quebec (Canada) among adult patients with chronic conditions. Psychometric properties evaluated included: internal consistency (Cronbach's alpha); test-retest reliability (intraclass correlation coefficient); and concurrent validity (Spearman's correlations with the Health Literacy Questionnaire (HLQ)). RESULTS: 178 participants completed the questionnaire at baseline and 47 completed the questionnaire two weeks later over the telephone. The average score was 13.3. Cronbach's alpha for internal consistency was 0.77. The intraclass correlation coefficient for test-retest reliability was 0.69 (95% confidence interval: 0.45-0.83). Concurrent validity with Spearman's correlation coefficient with three subscales of HLQ ranged from 0.28 to 0.58. CONCLUSIONS: The BHLS-FCv demonstrated acceptable psychometric properties and could be used in a population with chronic conditions in primary 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.

Implementation analysis of case management interventions for frequent users of healthcare services: A multiple-case study.

Context. Case management interventions (CMIs) are recognized to improve patients' experience of integrated care, to promote better utilization of healthcare resources, and to reduce emergency department visits, hospitalizations and health care costs. However, contextual factors influencing implementation of CMIs in primary care settings in Canada still need to be studied. Objective. To examine facilitators and barriers influencing implementation planning, engagement of key actors and the start-up phases of a CMI led by nurse case managers for frequent users of healthcare services with chronic diseases and complex care needs. Study design. Qualitative multiple case study design. Setting. Six primary care clinics across four provinces in Canada. Population studied. Frequent users of healthcare services with chronic diseases and complex care needs. Intervention. A CMI led by nurse case managers that included four main components: 1) patient needs assessment; 2) care planning, including an individual services plan (ISP); 3) coordination of services among health and social services partners; 4) self-management support for patients and families. Methods. Data collection: in-depth interviews with nurse case managers (n=10), clinic managers (n=5), and other healthcare professionals (n=5); six focus groups with family physicians (n=20), and other healthcare professionals (n=8); and field notes by research coordinators. Analysis: Mixed descriptive thematic analysis; intra-case histories; systematic comparison among cases by means of a descriptive and interpretative matrix; investigator and patient partners triangulation. Outcome Measures. Factors influencing the implementation of the CMI in primary care settings. Results. Difficulty of access to patient hospital information is a common barrier to all cases, as well as identification and recruitment of patients with the greatest needs of a CMI. Nurse case managers need extra time in the short term, especially when preparing and conducting the ISP. On the other hand, a culture of patient-centredness and collaboration; managerial and clinical leadership and support; and a positive perception of the CMI alongside provider engagement helps to overcome these barriers. Conclusions. This study may help researchers, decision-makers and clinicians plan the implementation of CMIs in primary care settings for frequent users of healthcare services with chronic diseases and complex care needs.

Case Management and Telehealth: A Scoping Review.

Background: Case management (CM) is an intervention adapted to the needs of patients with chronic conditions or complex needs. Factors associated with effectiveness of CM, such as high intervention intensity, can represent challenges to its implementation. Telehealth has the potential to help overcome these challenges, but little work has been done to synthesize available evidence on telehealth CM. The purpose of this scoping review was thus to fill this gap and document which telehealth modalities have been used, summarize perspectives of key users, and discuss evidence on effectiveness of telehealth-delivered CM. Methods: A search in MEDLINE, Scopus, and CINAHL for articles published between January 2005 and January 2021 was done. Studies in which telehealth was used for patient-case manager interaction and conducted in a population with complex health needs and/or chronic conditions were included. Articles selected for full-text review were independently screened by two reviewers. Data extraction was conducted once and validated by a second reviewer. Results: Of 3,108 articles, 22 were retained for data extraction. A narrative synthesis was conducted. Most studies evaluated CM interventions delivered over telephone, yet, literature suggests that face-to-face contact is essential to CM success. Results also indicate that telehealth CM is acceptable and effective, associated with better utilization of health services and favorable clinical outcomes. Conclusions: Lack of research evaluating telehealth CM delivered using modalities other than telephone. Further research should evaluate CM interventions that integrate platforms enabling visual information exchange.

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.

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.