There 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. Healthcare 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-engagement for research and will examine potential opportunities for IKT researchers as they navigate and enact meaningful partnerships with patients and the public.

Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences. Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team. This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research. Background Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities. Discussion The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research. Conclusions Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

In Canada, as in other parts of the world, there is geographic maldistribution of the nursing workforce, and insufficient attention is paid to the strengths and needs of those providing care in rural and remote settings. In order to inform workforce planning, a national study, Nursing Practice in Rural and Remote Canada II, was conducted with the rural and remote regulated nursing workforce (registered nurses, nurse practitioners, licensed or registered practical nurses, and registered psychiatric nurses) with the intent of informing policy and planning about improving nursing services and access to care. In this article, the study methods are described along with an examination of the characteristics of the rural and remote nursing workforce with a focus on important variations among nurse types and regions. A cross-sectional survey used a mailed questionnaire with persistent follow-up to achieve a stratified systematic sample of 3822 regulated nurses from all provinces and territories, living outside of the commuting zones of large urban centers and in the north of Canada. Rural workforce characteristics reported here suggest the persistence of key characteristics noted in a previous Canada-wide survey of rural registered nurses (2001-2002), namely the aging of the rural nursing workforce, the growth in baccalaureate education for registered nurses, and increasing casualization. Two thirds of the nurses grew up in a community of under 10 000 people. While nurses’ levels of satisfaction with their nursing practice and community are generally high, significant variations were noted by nurse type. Nurses reported coming to rural communities to work for reasons of location, interest in the practice setting, and income, and staying for similar reasons. Important variations were noted by nurse type and region. The proportion of the rural nursing workforce in Canada is continuing to decline in relation to the proportion of the Canadian population in rural and remote settings. Survey results about the characteristics and practice of the various types of nurses can support workforce planning to improve nursing services and access to care.

While death is a universal human experience, the process of planning for death can be difficult and may be avoided altogether. To understand community perspectives of end-of-life preparedness, we undertook a multimethod study exploring the experiences of 25 community members and 10 stakeholders engaged in end-of-life planning. In addition, card sorting activities and focused discussions with 97 older adults were undertaken to highlight perspectives and needs. Data were analyzed using descriptive statistics and qualitative description. Overall, the participants perceived many benefits to being end-of-life prepared, however, few community members had engaged in formal planning. Key barriers include concerns about the accessibility and accuracy of information, discomfort when engaging in end-of-life conversations, and perceptions about the cost associated with engaging in formal legal or financial preparations. Areas for further research include the need for studies that capture the cultural dimensions of end-of-life planning and explores the implementation and evaluation of community-based interventions to improve preparedness.

Knowledge translation (KT) is increasingly recognized as a practical and effective way to improve the use of evidence in healthcare practice and policy.² The Canadian Institutes of Health Research defines KT as “a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve health, provide more effective health services and products, and strengthen the health care system”.³ Since 2013, in Brazil, the Rede para Políticas Informadas por Evidências (Evidence-Informed Policy Network - EVIPNet Brasil), a global WHO initiative, has supported evidence-informed decision making in healthcare policy.⁴ They have produced 14 evidence syntheses and eight deliberative dialogues for knowledge synthesis. With its emphasis on building mutual understanding and leveraging relationships to strengthen the use of evidence in practice and policy, this is an example of an integrated KT (IKT) strategy.