Relational practices for meaningful inclusion in health research: Results of a deliberative dialogue study.

INTRODUCTION: The importance of including people affected by research (e.g., community members, citizens or patient partners) is increasingly recognized across the breadth of institutions involved in connecting research with action. Yet, the increasing rhetoric of inclusion remains situated in research systems that tend to reward traditional dissemination and uphold power dynamics in ways that centre particular (privileged) voices over others. In research explicitly interested in doing research with those most affected by the issue or outcomes, research teams need to know how to advance meaningful inclusion. This study focused on listening to voices often excluded from research processes to understand what meaningful inclusion looks and feels like, and asked what contributes to being or feeling tokenized. METHODS: In this deliberative dialogue study, 16 participants with experience of navigating social exclusions and contributing to research activities reflected on what makes for meaningful experiences of inclusion. Using a co-production approach, with a diversely representative research team of 15 that included patient and community partners, we used critically reflective dialogue to guide an inclusive process to study design and implementation, from conceptualization of research questions through to writing. RESULTS: We heard that: research practices, partnerships and systems all contribute to experiences of inclusion or exclusion; the insufficiency or absence of standards for accountability amplifies the experience of exclusion; and inclusive practices require intention, planning, reflection and resources. CONCLUSIONS: We offer evidence-informed recommendations for the deeply relational work and practices for inclusivity, focused on promising practices for cultivating welcoming systems, spaces and relationships. PATIENT OR PUBLIC CONTRIBUTION: This work reflects a co-production approach, where people who use and are affected by research results actively partnered in the research process, including study design, data-generating activities, analysis and interpretation, and writing. Several of these partners are authors of this manuscript.

Assessment of an Interactive Digital Health-Based Self-management Program to Reduce Hospitalizations Among Patients With Multiple Chronic Diseases: A Randomized Clinical Trial.

Importance: Digital health programs may have the potential to prevent hospitalizations among patients with chronic diseases by supporting patient self-management, symptom monitoring, and coordinated care. Objective: To compare the effect of an internet-based self-management and symptom monitoring program targeted to patients with 2 or more chronic diseases (internet chronic disease management [CDM]) with usual care on hospitalizations over a 2-year period. Design, Setting, and Participants: This single-blinded randomized clinical trial included patients with multiple chronic diseases from 71 primary care clinics in small urban and rural areas throughout British Columbia, Canada. Recruitment occurred between October 1, 2011, and March 23, 2015. A volunteer sample of 456 patients was screened for eligibility. Inclusion criteria included daily internet access, age older than 19 years, fluency in English, and the presence of 2 or more of the following 5 conditions: diabetes, heart failure, ischemic heart disease, chronic kidney disease, or chronic obstructive pulmonary disease. A total of 230 patients consented to participate and were randomized to receive either the internet CDM intervention (n = 117) or usual care (n = 113). One participant in the internet CDM group withdrew from the study after randomization, resulting in 229 participants for whom data on the primary outcome were available. Interventions: Internet-based self-management program using telephone nursing supports and integration within primary care compared with usual care over a 2-year period. Main Outcomes and Measures: The primary outcome was all-cause hospitalizations at 2 years. Secondary outcomes included hospital length of stay, quality of life, self-management, and social support. Additional outcomes included the number of participants with at least 1 hospitalization, the number of participants who experienced a composite outcome of all-cause hospitalization or death, the time to first hospitalization, and the number of in-hospital days. Results: Among 229 participants included in the analysis, the mean (SD) age was 70.5 (9.1) years, and 141 participants (61.6%) were male; data on race and ethnicity were not collected because there was no planned analysis of these variables. The internet CDM group had 25 fewer hospitalizations compared with the usual care group (56 hospitalizations vs 81 hospitalizations, respectively [30.9% reduction]; relative risk [RR], 0.68; 95% CI, 0.43-1.10; P = .12). The intervention group also had 229 fewer in-hospital days compared with the usual care group (282 days vs 511 days, respectively; RR, 0.52; 95% CI, 0.24-1.10; P = .09). Components of self-management and social support improved in the intervention group. Fewer participants in the internet CDM vs usual care group had at least 1 hospitalization (32 of 116 individuals [27.6%] vs 46 of 113 individuals [40.7%]; odds ratio [OR], 0.55; 95% CI, 0.31-0.96; P = .03) or experienced the composite outcome of all-cause hospitalization or death (37 of 116 individuals [31.9%] vs 51 of 113 individuals [45.1%]; OR, 0.57; 95% CI, 0.33-0.98; P = .04). Participants in the internet CDM group had a lower risk of time to first hospitalization (hazard ratio, 0.62; 95% CI, 0.39-0.97; P = .04) than those in the usual care group. Conclusions and Relevance: In this study, an internet-based self-management program did not result in a significant reduction in hospitalization. However, fewer participants in the intervention group were admitted to the hospital or experienced the composite outcome of all-cause hospitalization or death. These findings suggest the internet CDM program has the potential to augment primary care among patients with multiple chronic diseases. Trial Registration: ClinicalTrials.gov Identifier: NCT01342263.

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.

Community perspectives of end-of-life preparedness.

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.

The Participant Recruitment Outcomes (PRO) study: Exploring contemporary perspectives of telehealth trial non-participation through insights from patients, clinicians, study investigators, and study staff.

BACKGROUND: Telehealth has been proposed as an alternative means to providing traditional modes of care while alleviating the need for participant travel and reducing overall healthcare costs. The purpose of this study was to explore contemporary perspectives of patients and stakeholders regarding non-participation in telehealth trials. METHODS: We undertook a two-phase exploratory qualitative study to understand the reasons behind patient non-participation in telehealth. Data were collected through semi-structured interviews with non-participating patient participants (n = 8) and stakeholders (n = 27) including clinicians, study investigators, and study staff. An analysis of interview data were undertaken and guided by a qualitative descriptive approach. FINDINGS: Patients and stakeholders reported many barriers to telehealth participation including technological barriers, limited understanding of disease, and an understated need for services. Both groups had some overlap in their concerns but also provided unique insights. CONCLUSION: The analysis of study findings revealed perspectives of patients and stakeholders including barriers to participation as well as suggestions for future telehealth initiatives. Further research is needed to explore non-participation including patient readiness to assist in the development of future telehealth programs.