87 research outputs found

    Understanding Lung Cancer Resources and Barriers among Worksites with Mostly Male Employees in Eight Rural Kentucky Counties: A Focus Group Discussion

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    Kentucky has the highest cancer incidence and mortality rates in the United States, and lung cancer is Kentucky\u27s leading cause of cancer deaths. Males in Kentucky have higher lung incidence and mortality rates than females. Through support from the SelfMade Health Network, Kentucky developed a Regional Resource Lead Organization that collaboratively developed a multi-component worksite intervention on lung cancer among male populations. The intervention targets eight Kentucky counties. The first component and focus of this manuscript included focus group meetings with organizational representatives in each county that provide health, educational, and social services to men and worksites. The focus groups discussed four distinct areas: (a) lung cancer-related resources and services in each county; (b) perceived ways men in worksites learn about and access health-related services; (c) identification of potential challenges and barriers to reaching men in worksites; and (d) creation of linkages and potential partnerships between community organizations and worksites. Forty-five organizational representatives participated in the eight focus groups. Most resources and services discussed were related to tobacco treatment. Employers were the most commonly perceived way men learn about and access health-related services, while attitudes and behaviors were the most commonly perceived barriers preventing men from accessing services. The most common potential linkages and partnerships across all areas were community organizations and groups, employers, health-care providers, and mass media. Partnering with employers may provide an opportunity to reach males with lung cancer prevention and control resources and services

    Health professional networks as a vector for improving healthcare quality and safety: a systematic review

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    Background: While there is a considerable corpus of theoretical and empirical literature on networks within and outside of the health sector, multiple research questions are yet to be answered. Objective: To conduct a systematic review of studies of professionals' network structures, identifying factors associated with network effectiveness and sustainability, particularly in relation to quality of care and patient safety. Methods: The authors searched MEDLINE, CINAHL, EMBASE, Web of Science and Business Source Premier from January 1995 to December 2009. Results: A majority of the 26 unique studies identified used social network analysis to examine structural relationships in networks: structural relationships within and between networks, health professionals and their social context, health collaboratives and partnerships, and knowledge sharing networks. Key aspects of networks explored were administrative and clinical exchanges, network performance, integration, stability and influences on the quality of healthcare. More recent studies show that cohesive and collaborative health professional networks can facilitate the coordination of care and contribute to improving quality and safety of care. Structural network vulnerabilities include cliques, professional and gender homophily, and over-reliance on central agencies or individuals. Conclusions: Effective professional networks employ natural structural network features (eg, bridges, brokers, density, centrality, degrees of separation, social capital, trust) in producing collaboratively oriented healthcare. This requires efficient transmission of information and social and professional interaction within and across networks. For those using networks to improve care, recurring success factors are understanding your network's characteristics, attending to its functioning and investing time in facilitating its improvement. Despite this, there is no guarantee that time spent on networks will necessarily improve patient care

    Patient Awareness and Approval for an Opt-Out Genomic Biorepository

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    Aim: In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository. Materials & methods: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA). Results: 32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%. Conclusion: These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository

    CareSearch: finding and evaluating Australia's missing palliative care literature

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    BACKGROUND: Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. RESULTS: To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. CONCLUSION: CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence

    The development, design, testing, refinement, simulation and application of an evaluation framework for communities of practice and social-professional networks

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    Background. Communities of practice and social-professional networks are generally considered to enhance workplace experience and enable organizational success. However, despite the remarkable growth in interest in the role of collaborating structures in a range of industries, there is a paucity of empirical research to support this view. Nor is there a convincing model for their systematic evaluation, despite the significant potential benefits in answering the core question: how well do groups of professionals work together and how could they be organised to work together more effectively? This research project will produce a rigorous evaluation methodology and deliver supporting tools for the benefit of researchers, policymakers, practitioners and consumers within the health system and other sectors. Given the prevalence and importance of communities of practice and social networks, and the extent of investments in them, this project represents a scientific innovation of national and international significance. Methods and design. Working in four conceptual phases the project will employ a combination of qualitative and quantitative methods to develop, design, field-test, refine and finalise an evaluation framework. Once available the framework will be used to evaluate simulated, and then later existing, health care communities of practice and social-professional networks to assess their effectiveness in achieving desired outcomes. Peak stakeholder groups have agreed to involve a wide range of members and participant organisations, and will facilitate access to various policy, managerial and clinical networks. Discussion. Given its scope and size, the project represents a valuable opportunity to achieve breakthroughs at two levels; firstly, by introducing novel and innovative aims and methods into the social research process and, secondly, through the resulting evaluation framework and tools. We anticipate valuable outcomes in the improved understanding of organisational performance and delivery of care. The project's wider appeal lies in transferring this understanding to other health jurisdictions and to other industries and sectors, both nationally and internationally. This means not merely publishing the results, but contextually interpreting them, and translating them to advance the knowledge base and enable widespread institutional and organisational application

    Mutations in CNNM4 Cause Jalili Syndrome, Consisting of Autosomal-Recessive Cone-Rod Dystrophy and Amelogenesis Imperfecta

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    The combination of recessively inherited cone-rod dystrophy (CRD) and amelogenesis imperfecta (AI) was first reported by Jalili and Smith in 1988 in a family subsequently linked to a locus on chromosome 2q11, and it has since been reported in a second small family. We have identified five further ethnically diverse families cosegregating CRD and AI. Phenotypic characterization of teeth and visual function in the published and new families reveals a consistent syndrome in all seven families, and all link or are consistent with linkage to 2q11, confirming the existence of a genetically homogenous condition that we now propose to call Jalili syndrome. Using a positional-candidate approach, we have identified mutations in the CNNM4 gene, encoding a putative metal transporter, accounting for the condition in all seven families. Nine mutations are described in all, three missense, three terminations, two large deletions, and a single base insertion. We confirmed expression of Cnnm4 in the neural retina and in ameloblasts in the developing tooth, suggesting a hitherto unknown connection between tooth biomineralization and retinal function. The identification of CNNM4 as the causative gene for Jalili syndrome, characterized by syndromic CRD with AI, has the potential to provide new insights into the roles of metal transport in visual function and biomineralization

    A realist evaluation of the role of communities of practice in changing healthcare practice

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    <p>Abstract</p> <p>Background</p> <p>Healthcare organisations seeking to manage knowledge and improve organisational performance are increasingly investing in communities of practice (CoPs). Such investments are being made in the absence of empirical evidence demonstrating the impact of CoPs in improving the delivery of healthcare. A realist evaluation is proposed to address this knowledge gap. Underpinned by the principle that outcomes are determined by the context in which an intervention is implemented, a realist evaluation is well suited to understand the role of CoPs in improving healthcare practice. By applying a realist approach, this study will explore the following questions: What outcomes do CoPs achieve in healthcare? Do these outcomes translate into improved practice in healthcare? What are the contexts and mechanisms by which CoPs improve healthcare?</p> <p>Methods</p> <p>The realist evaluation will be conducted by developing, testing, and refining theories on how, why, and when CoPs improve healthcare practice. When collecting data, context will be defined as the setting in which the CoP operates; mechanisms will be the factors and resources that the community offers to influence a change in behaviour or action; and outcomes will be defined as a change in behaviour or work practice that occurs as a result of accessing resources provided by the CoP.</p> <p>Discussion</p> <p>Realist evaluation is being used increasingly to study social interventions where context plays an important role in determining outcomes. This study further enhances the value of realist evaluations by incorporating a social network analysis component to quantify the structural context associated with CoPs. By identifying key mechanisms and contexts that optimise the effectiveness of CoPs, this study will contribute to creating a framework that will guide future establishment and evaluation of CoPs in healthcare.</p
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