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.

Demographic and Clinical Presentations of Youth using Enhanced Mental Health Services in Six Indigenous Communities from the ACCESS Open Minds Network.

OBJECTIVE: In many Indigenous communities, youth mental health services are inadequate. Six Indigenous communities participating in the ACCESS Open Minds (AOM) network implemented strategies to transform their youth mental health services. This report documents the demographic and clinical presentations of youth accessing AOM services at these Indigenous sites. METHODS: Four First Nations and two Inuit communities contributed to this study. Youth presenting for mental health services responded to a customized sociodemographic questionnaire and presenting concerns checklist, and scales assessing distress, self-rated health and mental health, and suicidal thoughts and behaviors. RESULTS: Combined data from the First Nations sites indicated that youth across the range of 11-29 years accessed services. More girls/women than boys/men accessed services; 17% identified as LBGTQ+. Most (83%) youth indicated having access to at least one reliable adult and getting along well with the people living with them. Twenty-five percent of youth reported difficulty meeting basic expenses. Kessler (K10) distress scores indicated that half likely had a moderate mental health problem and a fourth had severe problems. Fifty-five percent of youth rated their mental health as fair or poor, while 50% reported suicidal thoughts in the last month. Anxiety, stress, depression and sleep issues were the most common presenting problems. Fifty-one percent of youth either accessed services themselves or were referred by family members. AOM was the first mental health service accessed that year for 68% of youth. CONCLUSIONS: This report is the first to present a demographic and clinical portrait of youth presenting at mental health services in multiple Indigenous settings in Canada. It illustrates the acceptability and feasibility of transforming youth mental health services using core principles tailored to meet communities' unique needs, resources, and cultures, and evaluating these using a common protocol. Data obtained can be valuable in evaluating services and guiding future service design. Trial registration name and number at Clinicaltrials.gov: ACCESS Open Minds/ACCESS Esprits ouverts, ISRCTN23349893.

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.

Enhancing health and wellness by, for and with Indigenous youth in Canada: a scoping review.

BACKGROUND: Indigenous youth in Canada face profound health inequities which are shaped by the rippling effects of intergenerational trauma, caused by the historical and contemporary colonial policies that reinforce negative stereotypes regarding them. Moreover, wellness promotion strategies for these youth are replete with individualistic Western concepts that excludes avenues for them to access holistic practices grounded in their culture. Our scoping review explored strategies, approaches, and ways health and wellness can be enhanced by, for, and with Indigenous youth in Canada by identifying barriers/roadblocks and facilitators/strengths to enhancing wellness among Indigenous youth in Canada. METHODS: We applied a systematic approach to searching and critically reviewing peer-reviewed literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews [PRISMA-ScR] as a reporting guideline. Our search strategy focused on specific keywords and MeSH terms for three major areas: Indigenous youth, health, and Canada. We used these keywords, to systematically search the following electronic databases published in English between January 01, 2017, to May 22, 2021: Medline [Ovid], PubMed, ERIC, Web of Science, Scopus, and iportal. We also used hand-searching and snowballing methods to identify relevant articles. Data collected were analysed for contents and themes. RESULTS: From an initial 1695 articles collated, 20 articles met inclusion criteria for this review. Key facilitators/strengths to enhancing health and wellness by, for, and with Indigenous youth that emerged from our review included: promoting culturally appropriate interventions to engage Indigenous youth; using strength-based approaches; reliance on the wisdom of community Elders; taking responsibility; and providing access to wellness supports. Key barriers/roadblocks included: lack of community support for wellness promotion activities among Indigenous youth; structural/organizational issues within Indigenous communities; discrimination and social exclusion; cultural illiteracy among youth; cultural discordance with mainstream health systems and services; and addictions and risky behaviours. CONCLUSION: This scoping review extracted 20 relevant articles about ways to engage Indigenous youth in health and wellness enhancement. Our findings demonstrate the importance of promoting health by, and with Indigenous youth, by engaging them in activities reflexive of their cultural norms, rather than imposing control measures that are incompatible with their value systems.

Pediatric oral health: community-based participatory research.

BACKGROUND: The most common chronic disease affecting children in Canada is dental caries. The objective of this study was to explore, identify, and address the strengths and barriers related to oral health services with an independent Indigenous community in Saskatchewan. METHODS: Community-based participatory research used interviews with Elders, health care providers, teachers, and parents/guardians of elementary school-aged children. The research focused on the development of genuine partnerships with the community. During data collection, the findings/results were returned to the community to establish direction, build success, and establish next steps. Thematic analysis was undertaken with the community. Descriptive statistics were analyzed using SPSS. RESULTS: The most commonly identified themes included: community resilience; the need for resource development and process to improve oral health literacy and skills; and how access to care barriers dually affected and related to personal and community cost, time, and human resources. CONCLUSIONS: The research process involved the co-creation of tools to identify strengths within the community and drive opportunities for change; subsequently generating solutions to the practical problems and potentially transform the health system accessed by the community.

Exploring how pregnant women in a remote northern community select a delivery location.

OBJECTIVE: To explore the perspectives and preferences of pregnant women receiving prenatal care in a rural community regarding delivery location. DESIGN: Exploratory qualitative research project. SETTING: The La Ronge Medical Clinic in northern Saskatchewan. PARTICIPANTS: Pregnant women of any parity aged 18 years or older who attended the clinic for prenatal care from March 1, 2018, to March 31, 2019, were invited to participate. The closest obstetric and surgical services are 240 km away. METHODS: This project was undertaken using semistructured interviews. The interviews were audiorecorded, transcribed, and analyzed using an inductive thematic analysis, taking into consideration both saturation and analyst triangulation. The investigators and researchers on this project were family medicine residents and faculty in a remote medical clinic. MAIN FINDINGS: The factors that played a substantial role in influencing the patients' decisions regarding delivery location included access to medical services, proximity to home community, perceptions of medical care providers, and some unique features of local hospitals. The participants largely believed they maintained their autonomy in selecting their preferred delivery location while seeking input from their prenatal care providers and families. CONCLUSION: Pregnant women in this rural community consider many factors when deciding on their delivery location. These findings can be taken into consideration by physicians when discussing with their rural patients the risks and benefits of delivery in both rural and urban centres. Barriers to local delivery should be addressed, while maintaining a woman's autonomy to choose where she gives birth.

Nurturing a culture of curiosity in family medicine and primary care: The Section of Researchers' Blueprint 2 (2018-2023).

OBJECTIVE: To describe Blueprint 2 (2018-2023), the 5-year strategic plan launched in 2018 by the Section of Researchers (SOR), as well as its guiding principles and the process used to develop it. COMPOSITION OF THE COMMITTEE: Blueprint 2 was co-created by many stakeholders from across Canada and led by the SOR Council (SORC). The process started with an external, commissioned program evaluation in 2017 of the effect of the first SOR Blueprint (2012-2017). The findings and recommendations arising from the evaluation were presented in a day-long facilitated invitational retreat, hosted by the SORC in September 2017 and involving 40 key stakeholders. METHODS: Blueprint 2 was created using a multi-pronged, participatory, and iterative process to ensure broad input and alignment with current and future opportunities and priorities. REPORT: Blueprint 2 incorporates 4 strategic priority areas, each supported by objectives and actions. The strategic priority areas are membership, capacity building, advocacy, and partnerships. This updated Blueprint provides a useful, membership-driven strategic plan specifically for the SOR. The implementation of its objectives will promote research and quality improvement and contribute to building a culture of curiosity. Blueprint 2 emphasizes research and quality improvement that emanate from the realities of everyday practice and are rooted in everyday work. At its core are patient- and community-oriented approaches; it also contributes to achieving the Quadruple Aim. These outcomes will further the integration of the scholar role into daily practice for family physicians and primary care clinicians and teams. CONCLUSION: The ability of family physicians to identify, study, and cite their own evidence is essential to establishing the value and effect of primary care, including family medicine, in relation to Canadians' health and the Canadian health care system.

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.

How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field.

BACKGROUND: Research funders in Canada and abroad have made substantial investments in supporting collaborative research approaches to generating and translating knowledge as it is believed to increase knowledge use. Canadian health research funders have advocated for the use of integrated knowledge translation (IKT) in health research, however, there is limited research around how IKT compares to other collaborative research approaches. Our objective was to better understand how IKT compares with engaged scholarship, Mode 2 research, co-production and participatory research by identifying the differences and similarities among them in order to provide conceptual clarity and reduce researcher and knowledge user confusion about these common approaches. METHODS: We employed a qualitative descriptive method using interview data to better understand experts' perspectives and experiences on collaborative research approaches. Participants' responses were analysed through thematic analysis to elicit core themes. The analysis was centred around the concept of IKT, as it is the most recent approach; IKT was then compared and contrasted with engaged scholarship, Mode 2 research, co-production and participatory research. As this was an iterative process, data triangulation and member-checking were conducted with participants to ensure accuracy of the emergent themes and analysis process. RESULTS: Differences were noted in the orientation (i.e. original purpose), historical roots (i.e. disciplinary origin) and partnership/engagement (i.e. role of partners etc.). Similarities among the approaches included (1) true partnerships rather than simple engagement, (2) focus on essential components and processes rather than labels, (3) collaborative research orientations rather than research methods, (4) core values and principles, and (5) extensive time and financial investment. Core values and principles among the approaches included co-creation, reciprocity, trust, fostering relationships, respect, co-learning, active participation, and shared decision-making in the generation and application of knowledge. All approaches require extensive time and financial investment to develop and maintain true partnerships. CONCLUSIONS: This qualitative study is the first to systematically synthesise experts' perspectives and experiences in a comparison of collaborative research approaches. This work contributes to developing a shared understanding of collaborative research approaches to facilitate conceptual clarity in use, reporting, indexing and communication among researchers, trainees, knowledge users and stakeholders to advance IKT and implementation science.

Health literacy - engaging the community in the co-creation of meaningful health navigation services: a study protocol.

BACKGROUND: A large proportion of patients encounter barriers to access and navigation in complex healthcare systems. They are unable to obtain information and services and to take appropriate action to improve their health. Low health literacy affects the ability of individuals to benefit from health services. Some social groups are disproportionately affected by low health literacy, including those with low educational attainment, Aboriginal people, and those on social assistance. These individuals face significant barriers in self-management of chronic diseases and in navigating the healthcare system. For these people, living in a context of deprivation contributes to maintaining disparities in access to healthcare and services. The objective of this study is to support knowledge co-construction and knowledge translation in primary care and services by involving underserved and Aboriginal people in research. METHODS: This study will integrate participatory health processes and action research to co-create, with patients, individuals, and community members impacted by health literacy, practical recommendations or solutions for facilitating navigation of the healthcare system by patients, individuals, and community members with less than optimal health literacy on how to best access health services. With this approach, academics and those for whom the research is intended will collaborate closely in all stages of the research to identify findings of immediate benefit to those impacted by health literacy and work together on knowledge translation. This study, carried out by researchers, community organizations and groups of people with low health literacy from three different regions of Quebec and Saskatchewan who can play an expert role in improving health services, will be conducted in three phases: 1) data collection; 2) data analysis and interpretation; and, 3) knowledge translation. DISCUSSION: Persons with low health literacy experience major obstacles in navigating the health system. This project will therefore contribute to addressing the gap between healthcare challenges and the needs of underserved patients with multi-morbidity and/or low health literacy who have complex health-related needs. It will pave the way for co-creating successful solutions for and with these communities that will increase their access to health services.

Is knowledge translation without patient or community engagement flawed?

Background: The engagement of patients/individuals and/or communities has become increasingly important in all aspects of the research process. Objective: The aim of this manuscript is to begin the discussion about the use and implementation of authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities. Methods: Community-Based Participatory Research; Transformative Action Research. Results and Discussion: In Canada, the framework for engaging patients/individuals and/or communities is clearly outlined in Chapter 9 of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans which indicates that when research projects involving First Nations, Inuit and Métis peoples, the peoples in these communities are to have a role in shaping/co-creating the research that affects them. It is increasingly important that presentations and manuscripts that evolve from results/findings which have engaged patients/individuals and/or communities be co-presented/co-published. Presentations are often done without patients/individuals and/or communities and manuscripts published with only academic authors. Frequently, grants submitted and subsequently funded do not consider this aspect of the process in the budget which makes integrated and outcome knowledge translation, dissemination and distribution by and with patients/individuals and/or communities difficult to facilitate. Conclusions: This manuscript was designed to begin the discussion at various levels related to authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities. How will you include patients/individuals and/or communities in your presentations and publications?

Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities.

Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

Determinants of excessive daytime sleepiness in two First Nation communities.

BACKGROUND: Excessive daytime sleepiness may be determined by a number of factors including personal characteristics, co-morbidities and socio-economic conditions. In this study we identified factors associated with excessive daytime sleepiness in 2 First Nation communities in rural Saskatchewan. METHODS: Data for this study were from a 2012-13 baseline assessment of the First Nations Lung Health Project, in collaboration between two Cree First Nation reserve communities in Saskatchewan and researchers at the University of Saskatchewan. Community research assistants conducted the assessments in two stages. In the first stage, brochures describing the purpose and nature of the project were distributed on a house by house basis. In the second stage, all individuals age 17 years and older not attending school in the participating communities were invited to the local health care center to participate in interviewer-administered questionnaires and clinical assessments. Excessive daytime sleepiness was defined as Epworth Sleepiness Scale score > 10. RESULTS: Of 874 persons studied, 829 had valid Epworth Sleepiness Scale scores. Of these, 91(11.0%) had excessive daytime sleepiness; 12.4% in women and 9.6% in men. Multivariate logistic regression analysis indicated that respiratory comorbidities, environmental exposures and loud snoring were significantly associated with excessive daytime sleepiness. CONCLUSIONS: Excessive daytime sleepiness in First Nations peoples living on reserves in rural Saskatchewan is associated with factors related to respiratory co-morbidities, conditions of poverty, and loud snoring.

Prevalence and associated risk factors of chronic bronchitis in First Nations people.

BACKGROUND: Inadequate housing, low family income, household smoking, personal smoking status, and poor schooling are some of the conditions that have been significantly associated with the prevalence and incidence of chronic bronchitis. The aim of the current study was to determine the prevalence of chronic bronchitis (CB) and associated risk factors among First Nations people. METHODS: An interviewer-administered survey was conducted as part of the First Nations Lung Health Project in 2012 and 2013 with 874 individuals from 406 households in two First Nations communities located in the province of Saskatchewan, Canada. The questionnaire collected information on individual and contextual determinants of health and a history of ever diagnosed with CB (outcome variable) from the two communities participating in the First Nations Lung Health Project. Clustering effect within households was adjusted using Generalized Estimating Equations. RESULTS: The prevalence of CB was 8.9% and 6.8% among residents (18 years and older) of community A and community B respectively and was not significantly different. CB prevalence was positively associated with odour or musty smell of mildew/mould in the house [OR adj (95% CI) = 2.33 (1.21, 4.50)], allergy to house dust [3.49 (1.75, 6.97)], an air conditioner in home [2.33 (1.18, 4.24)], and increasing age [0.99 (0.33, 2.95), 4.26 (1.74, 10.41), 6.08 (2.58, 14.33)]. An interaction exposure to environmental tobacco smoke in the house*body mass index showed that exposure to household smoke increased the risk of CB for overweight and obese participants (borderline). Some of the variables of interest were not significantly associated with the prevalence of CB in multivariable analysis, possibly due to small numbers. CONCLUSIONS: Our results suggest that significant determinants of CB were: increasing age; odour or musty smell of mildew/mould in the house; allergy to house dust; and, body mass index. Modifiable risk factors identified were: (i) community level-housing conditions (such as mould or mildew in home, exposure to environmental tobacco smoke in house); and, (ii) policy level-remediation of mould, and obesity. TRIAL REGISTRATION: Not applicable.