Explore the vast range of titles available.

Background The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people’s lives. Though patient engagement conceptually begins to disrupt the identity of “researcher,” and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of “patient” as a homogenous group, denying the reality that individuals’ economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways. Discussion Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis. Summary This article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both “patient” and “researcher,” spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency — integral to the advancement of the science of patient engagement in health research.

Background The importance of effective translation of health research findings into action has been well recognized, but there is evidence to suggest that the practice of knowledge translation (KT) among health researchers is still evolving. Compared to research user stakeholders, researchers (knowledge producers) have been under-studied in this context. The goals of this study were to understand the experiences of health researchers in practicing KT in Manitoba, Canada, and identify their support needs to sustain and increase their participation in KT. Methods Qualitative semi-structured interviews were conducted with 26 researchers studying in biomedical; clinical; health systems and services; and social, cultural, environmental and population health research. Interview questions were open-ended and probed participants’ understanding of KT, their experiences in practicing KT, barriers and facilitators to practicing KT, and their needs for KT practice support. Results KT was broadly conceptualized across participants. Participants described a range of KT practice experiences, most of which related to dissemination. Participants also expressed a number of negative emotions associated with the practice of KT. Many individual, logistical, and systemic or organizational barriers to practicing KT were identified, which included a lack of institutional support for KT in both academic and non-academic systems. Participants described the presence of good relationships with stakeholders as a critical facilitator for practicing KT. The most commonly identified needs for supporting KT practice were access to education and training, and access to resources to increase awareness and promotion of KT. While there were few major variations in response trends across most areas of health research, the responses of biomedical researchers suggested a unique KT context, reflected by distinct conceptualizations of KT (such as commercialization as a core component), experiences (including frustration and lack of support), and barriers to practicing KT (for example, intellectual property concerns). Conclusions The major findings of this study were the continued variations in conceptualization of KT, and persisting support needs that span basic individual to comprehensive systemic change. Expanding the study to additional regions of Canada will present opportunities to compare and contrast the state of KT practice and its influencing factors.

OBJECTIVE: To test the hypothesis that hepatic steatosis is associated with risk factors for type 2 diabetes in overweight and obese youth, mediated by cardiorespiratory fitness. RESEARCH DESIGN AND METHODS: This was a cross-sectional study comparing insulin sensitivity between 30 overweight and obese adolescents with hepatic steatosis, 68 overweight and obese adolescents without hepatic steatosis, and 11 healthy weight adolescents without hepatic steatosis. Cardiorespiratory fitness was determined by a graded maximal exercise test on a cycle ergometer. Secondary outcomes included presence of metabolic syndrome and glucose response to a 75-g oral glucose challenge. RESULTS: The presence of hepatic steatosis was associated with 55% lower insulin sensitivity (P = 0.02) and a twofold greater prevalence of metabolic syndrome (P = 0.001). Differences in insulin sensitivity (3.5 vs. 4.5 mU ⋅ kg–1 ⋅ min–1, P = 0.03), prevalence of metabolic syndrome (48 vs. 20%, P = 0.03), and glucose area under the curve (816 vs. 710, P = 0.04) remained between groups after matching for age, sex, and visceral fat. The association between hepatic steatosis and insulin sensitivity (β = –0.24, t = –2.29, P < 0.025), metabolic syndrome (β = –0.54, t = –5.8, P < 0.001), and glucose area under the curve (β = 0.33, t = 3.3, P < 0.001) was independent of visceral and whole-body adiposity. Cardiorespiratory fitness was not associated with hepatic steatosis, insulin sensitivity, or presence of metabolic syndrome. CONCLUSIONS: Hepatic steatosis is associated with type 2 diabetes risk factors independent of cardiorespiratory fitness, whole-body adiposity, and visceral fat mass.

Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research ( n  = 43, 81.1%). Those who had engaged reported having some ( n  = 19, 44.2%), extensive ( n  = 14, 32.6%) or a little ( n  = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients ( n  = 38, 82.6%) and families/caregivers ( n  = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

Despite extensive literature describing the use of social media in health research, a gap exists around best practices in establishing, implementing, and evaluating an effective social media knowledge translation (KT) and exchange strategies. This study aims to examine successes, challenges, and lessons learned from using social media within health research and to create practical considerations to guide other researchers. The Knowledge Translation Platform of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit formed a national working group involving platform staff, academics, and a parent representative with experience using social media for health research. We collected and analyzed 4 case studies that used a variety of social media platforms and evaluation methods. The case studies covered a spectrum of initiatives from participant recruitment and data collection to dissemination, engagement, and evaluation. Methods and findings from each case study as well as barriers and facilitators encountered were summarized. Through iterative discussions, we converged on recommendations and considerations for health researchers planning to use social media for KT. We provide recommendations for elements to consider when developing a social media KT strategy: (1) set a clear goal and identify a theory, framework, or model that aligns with the project goals and objectives; (2) understand the intended audience (use social network mapping to learn what platforms and social influences are available); (3) choose a platform or platforms that meet the needs of the intended audience and align well with the research team's capabilities (can you tap into an existing network, and what mode of communication does it support?); (4) tailor messages to meet user needs and platform requirements (eg, plain language and word restrictions); (5) consider timing, frequency, and duration of messaging as well as the nature of interactions (ie, social filtering and negotiated awareness); (6) ensure adequate resources and personnel are available (eg, content creators, project coordinators, communications experts, and audience stakeholder or patient advocate); (7) develop an evaluation plan a priori driven by goals and types of data available (ie, quantitative and qualitative); and (8) consider ethical approvals needed (driven by evaluation and type of data collection). In the absence of a comprehensive framework to guide health researchers using social media for KT, we provide several key considerations. Future research will help validate the proposed components and create a body of evidence around best practices for using and evaluating social media as part of a KT strategy.

Patient and public involvement in health research is important to produce relevant and impactful results. This paper aimed to prioritize and summarize Hirschsprung disease (HD)-related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign. We conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics. Our findings showed that 54.9% (89/162) of the individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none. With caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.

Background Children with complex needs can face barriers to system access and navigation related to their need for multiple services and healthcare providers. Central intake for pediatric rehabilitation was developed and implemented in 2008 in Winnipeg Manitoba Canada as a means to enhance service coordination and access for children and their families. This study evaluates the process and impact of implementing a central intake system, using pediatric physiotherapy as a case example. Methods A mixed methods instrumental case study design was used. Interviews were completed with 9 individuals. Data was transcribed and analyzed for themes. Quantitative data (wait times, referral volume and caregiver satisfaction) was collected for children referred to physiotherapy with complex needs ( n  = 1399), and a comparison group of children referred for orthopedic concerns ( n  = 3901). Wait times were analyzed using the Kruskal-Wallis test, caregiver satisfaction was analyzed using Fisher exact test and change point modeling was applied to examine referral volume over the study period. Results Interview participants described central intake implementation as creating more streamlined processes. Factors that facilitated successful implementation included 1) agreement among stakeholders, 2) hiring of a central intake coordinator, 3) a financial commitment from the government and 4) leadership at the individual and organization level. Mean (sd) wait times improved for children with complex needs (12.3(13.1) to 8.0(6.9) days from referral to contact with family, p  < 0.0001; 29.8(17.9) to 24.3(17.0) days from referral to appointment, p  < 0.0001) while referral volumes remained consistent. A small but significant increase in wait times was observed for the comparison group (9.6(8.6) to 10.1(6.6) days from referral to contact with family, p  < 0.001; 20.4(14.3) to 22.1(13.1) days from referral to appointment, p  < 0.0001), accompanied by an increasing referral volume for this group. Caregiver satisfaction remained high throughout the process ( p  = 0.48). Conclusions Central intake implementation achieved the intended outcomes of streamlining processes and improving transparency and access to pediatric physiotherapy (i.e., decreasing wait times) for families of children with complex needs. Future research is needed to build on this single discipline case study approach to examine changes in wait times, therapy coordination and stakeholder satisfaction within the context of continuing improvements for pediatric therapy services within the province.

Background Existing literature demonstrating the negative impact of delayed hip fracture surgery on mortality consists largely of observational studies prone to selection bias and may overestimate the negative effects of delay. We conducted an intervention study to assess initiatives aimed at meeting a 48-hour benchmark for hip fracture surgery to determine if the intervention achieved a reduction in time to surgery, and if a general reduction in time to surgery improved mortality and length of stay. Methods We compared time to surgery, length of stay and mortality between pre- and postintervention patients with a hip fracture using the Kaplan–Meier estimator and Cox proportional hazards model adjusting for age, sex, comorbidities, type of surgery and year. Results We included 3525 pre- and 3007 postintervention patients aged 50 years or older. The proportion of patients receiving surgery within the benchmark increased from 66.8% to 84.6%, median length of stay decreased from 13.5 to 9.7 days, and crude in-hospital mortality decreased from 9.6% to 6.8% (all p < 0.001). Adjusted analyses revealed reduced mortality in hospital (hazard ratio [HR] 0.68, 95% confidence interval [CI] 0.57–0.81) and at 1 year (HR 0.87, 95%CI 0.79–0.96). Independent of the intervention period, having surgery within 48 hours demonstrated decreased adjusted risk of death in hospital (HR 0.51, 95%CI 0.41–0.63) and at 1 year postsurgery (HR 0.72, 95% CI 0.64–0.80). Conclusion Coordinated, region-wide efforts to improve timeliness of hip fracture surgery can successfully reduce time to surgery and appears to reduce length of stay and adjusted mortality in hospital and at 1 year.

Background Historically, the experiences and voices of children and youth living with neurodiversity or rehabilitation needs and their families have not been fully represented in health research. Formative research in this context indicates that families value learning from the experiences of other families as well as from empirical research. However, innovative systems are needed to support this imperative. In response, we co-designed a virtual living lab with families and clinicians to support family-centered knowledge exchange in neurodiversity and rehabilitation research. Living labs are collaborative, user-centered, long-term, and multimethod systems with potential to support the exchange of knowledge of lived experience. This proposal outlines a longitudinal arts-based and qualitative research study that incorporates storytelling as a powerful tool to elicit and exchange stories of lived experience through the virtual living lab, and subsequent usability testing of the platform. Methods and Analysis Stage 1- We will conduct an integrated knowledge translation study inclusive of user centered lab design and construction. Stage 2- We will conduct a 6-month longitudinal qualitative storytelling study with 30–40 participants including neurodiverse children and youth ages 5–19 years, their siblings, and parent/guardians, guided by the F-words framework which is based on the International Classification of Functioning, Disability, and Health. Following user-registration within the virtual lab, participants will complete a minimum of 1 story monthly, accompanied by an arts-based component, for 6 months. Conclusion Findings will inform the co-development of an arts-based knowledge translation resource to communicate key findings. Stage 3- A subset of families will be sampled to complete usability testing of the living lab platform and storytelling feature using a sequential explanatory mixed methods design. Usability evaluation will inform future platform refinements and provide indications of acceptability and use across subgroups.

Recognizing the systemic exclusion of structurally oppressed groups from academic awards, the ENRRICH (Excellence in Neurodevelopment and Rehabilitation Research In Child Health) summer studentship emphasized the inclusion of structurally oppressed groups. Herein, we outline the processes in creating this funding opportunity, and plans for improvement, including enhanced representation among supervisors.