Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?

PLAIN ENGLISH SUMMARY: 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. ABSTRACT: 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.

Using qualitative Health Research methods to improve patient and public involvement and engagement in research.

PLAIN ENGLISH SUMMARY: 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. ABSTRACT: 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.

The organizational attributes of HIV care delivery models in Canada: A cross-sectional study.

HIV treatment in Canada has rapidly progressed with the advent of new drug therapies and approaches to care. With this evolution, there is increasing interest in Canada in understanding the current delivery of HIV care, specifically where care is delivered, how, and by whom, to inform the design of care models required to meet the evolving needs of the population. We conducted a cross-sectional survey of Canadian care settings identified as delivering HIV care between June 2015 and January 2016. Given known potential differences in delivery approaches, we stratified settings as primary care or specialist settings, and described their structure, geographic location, populations served, health human resources, technological resources, and available clinical services. We received responses from 22 of 43 contacted care settings located in seven Canadian provinces (51.2% response rate). The total number of patients and HIV patients served by the participating settings was 38,060 and 17,678, respectively (mean number of HIV patients in primary care settings = 1,005, mean number of HIV patients in specialist care settings = 562). Settings were urban for 20 of the 22 (90.9%) clinics and 14 (63.6%) were entirely HIV focused. Primary care settings were more likely to offer preventative services (e.g., cervical smear, needle exchange, IUD insertion, chronic disease self-management program) than specialist settings. The study illustrates diversity in Canadian HIV care settings. All settings were team based, but primary care settings offered a broader range of preventative services and comprehensive access to mental health services, including addictions and peer support.

Cardiac rehabilitation and the therapeutic environment: the importance of physical, social, and symbolic safety for programme participation among women.

AIM: To report an exploration of the multidimensionality of safety in cardiac rehabilitation programmes as perceived by women who were enrolled in the Women's Cardiovascular Health Initiative in Toronto, Canada. BACKGROUND: Cardiovascular disease is the leading cause of death among women. Although cardiac rehabilitation is clinically effective, significantly fewer women than men participate in available programmes. The literature identifies factors affecting women's cardiac rehabilitation participation, and provides possible explanations for this gender disparity. Although safety is mentioned among the barriers to women's cardiac rehabilitation participation, the extent to which safety contributes to programme participation, completion, and maintenance remains under-explored in the cardiac rehabilitation literature. DESIGN: We conducted an exploratory qualitative study to examine the role safety and place play for women engaged in cardiac prevention and rehabilitation at the Women's Cardiovascular Health Initiative. Methods. From 2005-2006, 14 participants engaged in semi-structured, qualitative interviews lasting 30-90 minutes. Discussions addressed women's experiences at the Women's Cardiovascular Health Initiative. Interview transcripts were analysed using thematic analysis. FINDINGS: Three themes were developed: 'Safety', which was sub-categorized according to physical, social, and symbolic interpretations of safety, 'searching for a sense of place', and 'confidence and empowerment'. CONCLUSION: Feeling physically, socially, and symbolically safe in one's cardiac rehabilitation environment may contribute to programme adherence and exercise maintenance for women. Focusing on comprehensive notions of safety in future cardiac rehabilitation research could offer insight into why many women do not maintain an exercise regimen in currently structured cardiac rehabilitation and community programmes.

Women's experiences accessing a women-centered cardiac rehabilitation program: a qualitative study.

BACKGROUND AND RESEARCH OBJECTIVE: The health benefits of cardiac rehabilitation (CR) for women living with heart disease are well documented, yet women remain underrepresented in traditionally structured CR programs. This health service delivery gap has been attributed to a number of sex-related factors experienced by women, including lower rates of physician referral, travel-related barriers, competing work and caregiving responsibilities, greater cardiovascular disease severity, and number of comorbid health conditions. Whether a program specifically designed for women is able to address these barriers and facilitate women's participation is a question that has seldom been explored in the CR literature. As part of a larger study exploring whether 6 predefined principles of women's health (empowerment of women, accessible programs, broad definition of health care, high-quality of care, collaborative planning, and innovative and creative approaches) are reflected in the practices of the Women's Cardiovascular Health Initiative (WCHI) (a comprehensive CR and primary prevention program designed for women), the objective of this analysis was to explore how the principle of "accessible programs" is experienced by women participating in the WCHI. PARTICIPANTS AND METHOD: Fourteen women previously enrolled in the WCHI program participated in a single, in-person qualitative interview. Transcripts were analyzed using a constant-comparative approach to identify relevant themes related to program accessibility. RESULTS: Key themes identified included participants' experiences with acquiring physician referral, negotiating transportation issues, and navigating program schedules. Women discussed how peer support and staff members' willingness to address their health-related concerns facilitated their participation. CONCLUSION: While a women-centered CR/primary prevention program may facilitate and encourage women's participation by providing flexible program schedules as well as peer and professional support, efforts are still required to address persistent barriers for women related to physician referral and transportation to programs.

Negotiating participation: how women living with disabilities address barriers to exercise.

Exercise participation among women living with disabilities can be limited as a result of pain, decreased muscle strength, and limited mobility. More "disabling" than these symptoms, however, is a lack of accessible exercise facilities in women's communities. Our study explores how material and social structures and functions existing and operating within women's communities and at community-based exercise facilities affect their participation. Interviews with 15 women living with disabilities were conducted and qualitatively analyzed. Participants discuss the benefits of their exercise participation, in addition to how they experience and negotiate structural and attitudinal barriers within community-based facilities.

Depression, estrogen, and the Women's Health Initiative.

This clinical observation report compares hormone use and clinical presentation in a series of middle-aged depressed women before and after publication of the Women's Health Initiative. Depressed women over age 40 seen at a general hospital academic women's affective disorders practice 6 months before and after publication of the Women's Health Initiative were compared for medication changes, hormone therapy, lifetime depressive episodes, time since last episode, time to depression recurrence after hormone cessation, symptoms, and treatment response. More women stopped hormone therapy and reported onset of depression within 3 weeks of hormone discontinuation after than before publication of the Women's Health Initiative. Depression in most women responded to reinstitution of estrogen or initiation or increase in antidepressant dose. Discontinuation of hormone therapy appears to be associated with the rapid recurrence of depression in some women with a history of depression. Randomized controlled trials in middle-aged depressed women of estrogen or a selective estrogen receptor modulator as monotherapy or as an augmentation agent are urgently needed.