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.

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.

Evaluation of a medication safety and adherence program within a First Nations community in Saskatchewan, Canada.

OBJECTIVE: The objective of this mixed methods report was to describe a pharmacist intervention to support medication adherence of patients living with chronic health conditions in a First Nations community. SETTING: The intervention took place in a First Nations community health center. PRACTICE DESCRIPTION: Multidisciplinary primary care clinic. PRACTICE INNOVATION: A pharmacist was integrated into the weekly primary care clinics to regularly monitor patients and address any medication-related issues. EVALUATION: The pharmacist intervention was evaluated qualitatively by using focus groups and interviews, and quantitatively by analyzing medication refill claims. RESULTS: The entire health care team believed that the support provided by the pharmacist encouraged the patients to take control of their health conditions and was beneficial to increasing patient self-management behaviors, including improved medication adherence. All staff appreciated the team-based model because it optimized appointment times and promoted better patient care. The patients valued having a pharmacist they trusted and with whom they had a relationship to address their concerns. In the 6 months after the date of the initial visit with the pharmacist, the median number of refill claims increased in comparison with the 6 months before. CONCLUSION: A clinical pharmacist contributes to improved satisfaction and medication adherence when integrated into a primary care team providing care in a First Nations community.

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?

Participatory health research: celebrating smoke-free homes.

For community engagement to be successful, the interests of the community must be taken into account and researchers must become facilitators. Patience is required. Meaningful and sustainable relationships that have been developed over time promote mutual learning and capacity building among the partners (Elders, community members, health care providers, and researchers). In addition, community engagement leads to the sharing of available resources (eg, human, time, and financial) and to a sustained commitment by the partners. This mutual commitment makes future projects easier to develop and complete. Thus, authentic transformative health development, informed by participatory health research, becomes an ongoing process.

In the eyes of Indigenous people in Canada: exposing the underlying colonial etiology of hepatitis C and the imperative for trauma-informed care.

Background: The distribution of hepatitis C (HCV) infection in Canada signals a widening gap between Indigenous and non-Indigenous people. Current evidence demonstrates that the rate of HCV infection among Indigenous people is at least five times higher than the rest of Canada. This analysis provides a reconciliatory response, which exposes the colonial etiology of the HCV gap in Canada and proposes potential anti-colonial approaches to HCV wellness and health care for Indigenous people. Methods: This analysis applies Two-Eyed Seeing as a reconciliatory methodology to advance the understanding of HCV burden and identify the key elements of responsive HCV care in the context of Indigenous nations in Canada. Results: The analysis underlines the colonial distribution of HCV burden in Canada, highlights Indigenous perspectives on HCV infection, hypothesizes a clinical pathway for the underlying colonial etiology of HCV infection, and identifies Indigenous healing as a promising anti-colonial conceptual approach to HCV wellness and health care among Indigenous people. Conclusions: In the eyes of Indigenous people, HCV infection is a colonial illness that entails healing as an anti-colonial approach to achieving wellness and gaining health. Future empirical research should elaborate on the colonial HCV pathway hypothesis and inform the development of a framework for HCV healing among Indigenous people in Canada.

Case management in primary care for frequent users of healthcare services with chronic diseases and complex care needs: an implementation and realist evaluation protocol.

INTRODUCTION: Significant evidence in the literature supports case management (CM) as an effective intervention to improve care for patients with complex healthcare needs. However, there is still little evidence about the facilitators and barriers to CM implementation in primary care setting. The three specific objectives of this study are to: (1) identify the facilitators and barriers of CM implementation in primary care clinics across Canada; (2) explain and understand the relationships between the actors, contextual factors, mechanisms and outcomes of the CM intervention; (3) identify the next steps towards CM spread in primary care across Canada. METHODS AND ANALYSIS: We will conduct a multiple-case embedded mixed methods study. CM will be implemented in 10 primary care clinics in five Canadian provinces. Three different units of analysis will be embedded to obtain an in-depth understanding of each case: the healthcare system (macro level), the CM intervention in the clinics (meso level) and the individual/patient (micro level). For each objective, the following strategy will be performed: (1) an implementation analysis, (2) a realist evaluation and (3) consensus building among stakeholders using the Technique for Research of Information by Animation of a Group of Experts method. ETHICS AND DISSEMINATION: This study, which received ethics approval, will provide innovative knowledge about facilitators and barriers to implementation of CM in different primary care jurisdictions and will explain how and why different mechanisms operate in different contexts to generate different outcomes among frequent users. Consensual and prioritised statements about next steps for spread of CM in primary care from the perspectives of all stakeholders will be provided. Our results will offer context-sensitive explanations that can better inform local practices and policies and contribute to improve the health of patients with complex healthcare needs who frequently use healthcare services. Ultimately, this will increase the performance of healthcare systems and specifically mitigate ineffective use and costs.

Case management in primary care among frequent users of healthcare services with chronic conditions: protocol of a realist synthesis.

INTRODUCTION: A common reason for frequent use of healthcare services is the complex healthcare needs of individuals suffering from multiple chronic conditions, especially in combination with mental health comorbidities and/or social vulnerability. Frequent users (FUs) of healthcare services are more at risk for disability, loss of quality of life and mortality. Case management (CM) is a promising intervention to improve care integration for FU and to reduce healthcare costs. This review aims to develop a middle-range theory explaining how CM in primary care improves outcomes among FU with chronic conditions, for what types of FU and in what circumstances. METHODS AND ANALYSIS: A realist synthesis (RS) will be conducted between March 2017 and March 2018 to explore the causal mechanisms that underlie CM and how contextual factors influence the link between these causal mechanisms and outcomes. According to RS methodology, five steps will be followed: (1) focusing the scope of the RS; (2) searching for the evidence; (3) appraising the quality of evidence; (4) extracting the data; and (5) synthesising the evidence. Patterns in context-mechanism-outcomes (CMOs) configurations will be identified, within and across identified studies. Analysis of CMO configurations will help confirm, refute, modify or add to the components of our initial rough theory and ultimately produce a refined theory explaining how and why CM interventions in primary care works, in which contexts and for which FU with chronic conditions. ETHICS AND DISSEMINATION: Research ethics is not required for this review, but publication guidelines on RS will be followed. Based on the review findings, we will develop and disseminate messages tailored to various relevant stakeholder groups. These messages will allow the development of material that provides guidance on the design and the implementation of CM in health organisations. TRIAL REGISTRATION NUMBER: Prospero CRD42017057753.