135 research outputs found

    Creating a Data Dictionary for Pediatric Autonomic Disorders

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    PURPOSE: Whether evaluating patients clinically, documenting care in the electronic health record, performing research, or communicating with administrative agencies, the use of a common set of terms and definitions is vital to ensure appropriate use of language. At a 2017 meeting of the Pediatric Section of the American Autonomic Society, it was determined that an autonomic data dictionary comprising aspects of evaluation and management of pediatric patients with autonomic disorders would be an important resource for multiple stakeholders. METHODS: Our group created the list of terms for the dictionary. Definitions were prioritized to be obtained from established sources with which to harmonize. Some definitions needed mild modification from original sources. The next tier of sources included published consensus statements, followed by Internet sources. In the absence of appropriate sources, we created a definition. RESULTS: A total of 589 terms were listed and defined in the dictionary. Terms were organized by Signs/Symptoms, Triggers, Co-morbid Disorders, Family History, Medications, Medical Devices, Physical Examination Findings, Testing, and Diagnoses. CONCLUSION: Creation of this data dictionary becomes the foundation of future clinical care and investigative research in pediatric autonomic disorders, and can be used as a building block for a subsequent adult autonomic data dictionary

    Evaluating the achievements and impacts of EC framework programme transport projects

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    Purpose The purpose of this paper is to present what kind of elements and evaluation methods should be included into a framework for evaluating the achievements and impacts of transport projects supported in EC Framework Programmes (FP). Further, the paper discusses the possibilities of such an evaluation framework in producing recommendations regarding future transport research and policy objectives as well as mutual learning for the basis of strategic long term planning. Methods The paper describes the two-dimensional evaluation methodology developed in the course of the FP7 METRONOME project. The dimensions are: (1) achievement of project objectives and targets in different levels and (2) research project impacts according to four impact groups. The methodology uses four complementary approaches in evaluation, namely evaluation matrices, coordinator questionnaires, lead user interviews and workshops. Results Based on the methodology testing, with a sample of FP5 and FP6 projects, the main results relating to the rationale, implementation and achievements of FP projects is presented. In general, achievement of objectives in both FPs was good. Strongest impacts were identified within the impact group of management and co-ordination. Also scientific and end-user impacts of the projects were adequate, but wider societal impacts quite modest. The paper concludes with a discussion both on the theoretical and practical implications of the proposed methodology and by presenting some relevant future research needs

    Not All Managers Are Managerial: A Self-Evaluation of Women Middle-Managers' Experiences in a UK University

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    The focus of this small-scale self-evaluation is the implementation of a new middle-management role in a post-92 UK university. A realist appreciative inquiry was undertaken with five women who had been promoted to a middle-management role 18 months prior to the inquiry. This evaluation for knowledge offered an opportunity to reflect on experiences in practice and sought to understand the experiences of the women in this role and how they cope with the challenges middle-management brings. Particular challenges (instability-generating) accorded with existing literature and included: lack of role clarity, lack of pre-preparation for management role, colleagues’ views of management, including perceptions of women in management roles and malicious intent of managed academics in rare cases. Supportive factors (provisional-stability-generating) included: personal resilience, informal peer support, external support and reflection. The co-evaluators offered reflections for the future from this co-evaluation. These suggest that training may contribute to provisional-stability in role and should be considered for new entrants to middle-management. The alternative construct of humanistic management is proposed as a way of understanding these women’s values-based decision-making practices in complex situations

    Evaluation for what purpose? Findings from two stakeholder groups

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    A host of reasons exist for the pursuit of evidence in the public sector, including to support good governance and policy development. As the expectations for program evaluation from policymakers have evolved, so too has evaluation practice and a great deal of experimentalism has ensued. There is a risk that these developments and the complexity inherent in them, may lead to conflicting expectations about why program evaluation is done, or even a loss of purpose. This prompts the meso-level analysis of two types of stakeholders in a governance network, explored in this chapter. This chapter presents the findings of an ongoing study which explores the perceptions of program evaluators and policy implementers towards the purpose of evidence. The findings suggest that program evaluators and policy implementers have divergent expectations of why and how evaluation data might be used. The findings suggest that program evaluators aspire to support change and enhance the policy domains they serve, whereas policy implementers perceive program evaluation as serving a more governance-/management-orientated role. The chapter demonstrates the complexity of both program evaluation and policy and may have implications for the twin pillars of governance and responsibility at the heart of the book. If governance and responsibility are the twin pillars of sustainability then the complex networks of relationships, expectations, values, and outcomes may need to be considered. The findings also have implications for evaluation commissioners and practitioners, demonstrating the need for the purpose and expectations of program evaluation to be agreed early. The use of program evaluation as a symbolic, aesthetic or structural mechanism also emerges, prompting opportunity for further research, for instance, to explore legitimacy and program evaluation.N/

    Quality versus Excellence: Introductory Remarks

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