Plain English summaryThere have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient outcomes. In addition, there are also concerns that research is being undertaken that does not reflects the realities or needs of those using healthcare services, and that the use of research findings in practice is slow. As such, shared approaches to research, such as integrated knowledge translation, are being used.Integrated knowledge translation (IKT) is a research approach that brings together researchers, along with other stakeholders that have knowledge about a particular healthcare issue. Stakeholders may include healthcare providers and policy-makers. More recently, there has been a growing awareness of the need to include patients and members of the public within research processes. These collaborative and patient-oriented research approaches are seen as a way to develop research that tackles ongoing gaps in practice and reflect the insights, needs and priorities of those most affected by health research outcomes. Despite great support, little is known about how these major research approaches are connected, or how they may bring about improvements in the development and use of research evidence. In this paper, we examine how IKT and patient engagement processes are linked, as well as exploring where differences exist. Through this, we highlight opportunities for greater patient engagement in IKT research and to identify areas that need to be understood further.AbstractHealthcare organizations across the world are being increasingly challenged to develop and implement services that are evidence-based and bring about improvement in patient and health service outcomes. Despite an increasing emphasis upon evidence-based practice, large variations in practice remain and gaps pervade in the creation and application of knowledge that improves outcomes. More collaborative models of health research have emerged over recent years, including integrated knowledge translation (IKT), whereby partnerships with key knowledge users are developed to enhance the responsiveness and application of the findings. Likewise, the meaningful engagement of patients, in addition to the inclusion of patient-reported outcomes and priorities, has been hailed as another mechanism to improve the relevance, impact and efficiency of research.Collectively, both IKT and patient engagement processes provide a vehicle to support research that can address health disparities and improve the delivery of effective and responsive healthcare services. However, the evidence to support their impact is limited and while these approaches are inextricably connected through their engagement focus, it is unclear how IKT and patient engagement processes are linked conceptually, theoretically, and practically. In this paper, we will begin to critically examine some of the linkages and tensions that exist between IKT and patient-eng...

Heart failure (HF) is a leading and growing cause of cardiovascular morbidity, mortality, and health care use in Canada. 1 The disease is associated with marked impairment in both functional capacity and quality of life for patients and their caregivers. 2,3 Despite the significant impact of this disease on the health of Canadians, there is limited awareness among health care providers, health care systems, governments, and patients and their families as to the magnitude of the HF epidemic, the natural history of the disease, and the potential benefits of available therapies. 4 In the past decade, the Canadian Cardiovascular Society (CCS) Heart Failure Guidelines Committee and the CCS have developed outstanding clinical practice guidelines and knowledge translation tools to inform optimal care of patients with HF in Canada. Although HF advocacy remains outside the scope of the guidelines panel, it is a central mandate of the Canadian Heart Failure Society (CHFS). In this article, we outline some of the key challenges facing the advancement of patient-centred HF care in Canada and provide a call to action for all stakeholders, outlining key targets for health care system redesign and policy initiatives that must be championed to affect meaningful change toward an optimal future for this disease state.

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Introduction Heart failure (HF) symptoms improve through self-care, for which adherence remains low among patients despite the provision of education for these behaviours by clinical teams. Open Access Digital Community Promoting Self-Care, Peer Support and Health Literacy (ODYSSEE–vCHAT) combines automated digital counselling with social network support to improve mortality and morbidity, engagement with self–care materials, and health-related quality of life. Methods and analysis Use of ODYSSEE-vCHAT via Internet-connected personal computer by 162 HF patients will be compared with a control condition over 22 months. The primary outcome is a composite index score of all-cause mortality, all-cause emergency department visits, and HF-related hospitalisation at trial completion. Secondary outcomes include individual components of the composite index, engagement with self-care materials, and patient-reported measures of physical and psychosocial well-being, disease management, health literacy, and substance use. Patients are recruited from tertiary care hospitals in Toronto, Canada and randomised on a 1:1 ratio to both arms of the trial. Online assessments occur at baseline (t=0), months 4, 8 and 12, and trial completion. Ordinal logistic regression analyses and generalised linear models will evaluate primary and secondary outcomes. Ethics and dissemination The trial has been approved by the research ethics boards at the University Health Network (20-5960), Sunnybrook Hospital (5117), and Mount Sinai Hospital (21-022-E). Informed consent of eligible patients occurs in person or online. Findings will be shared with key stakeholders and the public. Results will allow for the preparation of a Canada-wide phase III trial to evaluate the efficacy of ODYSSEE-vCHAT in improving clinical outcomes and raising the standard of outpatient care. Trial registration number NCT04966104

Background People living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effective way to address the unique concerns and obstacles people living with HF face during this period. The aim of this narrative review article is to discuss challenges and opportunities of this approach, with the goal of improving participation and clinical outcomes of people living with HF. Methods This article was co-authored by people living with HF, heart transplant recipients, patient advocacy representatives, cardiologists with expertise in HF care, and industry representatives specializing in patient engagement and cardiovascular medicine, and reviews opportunities and challenges for people living with HF in the post–hospital discharge period to be more integrally involved in their care. A literature search was conducted, and the authors collaborated through two virtual roundtables and via email to develop the content for this review article. Results Numerous transitional-care programs exist to ease the transition from the hospital to the home and to provide needed education and support for people living with HF, to avoid rehospitalizations and other adverse outcomes. However, many programs have limitations and do not integrally involve patients in the design and co-development of the intervention. There are thus opportunities for improvement. This can enable patients to better care for themselves with less of the worry and fear that typically accompany the transition from the hospital. We discuss the importance of including people living with HF in the development of such programs and offer suggestions for strategies that can help achieve these goals. An underlying theme of the literature reviewed is that education and engagement of people living with HF after hospitalization are critical. However, while clinical trial evidence on existing approaches to transitions in HF care indicates numerous benefits, such approaches also have limitations. Conclusion Numerous challenges continue to affect people living with HF in the post–hospital discharge period. Strategies that involve patients are needed, and should be encouraged, to optimally address these challenges.