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User Expectations of Metadata Repositories for Clinical Research

机译:对临床研究的元数据存储库的用户期望

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Metadata Repositories (MDR) are databases for data elements that can be utilized in research as well as in medical care. These data elements are not the actual patient data (facts), but a complete definition of the variables or characteristics used, including coding, unit of measurement, data type and other aspects. The aim of the project described here was to evaluate possible application scenarios for MDRs by a larger group of experts. The focus was not on specific software, but on the community's basic expectation of such a database of data elements. To achieve this goal, a questionnaire was designed that contained questions on general aspects of setting up a registry for data elements in biomedical research as well as more specific points with regard to necessary functionalities, desired contents, tools for community work and the quality of data elements. One of the main results was that the users attach more importance to the quality of the content than to the efficiency in implementing their documentation concepts. At the same time, they consider the effort involved in using existing software systems to be too much compared with the benefits and have concerns about the use of their designs by third parties.
机译:元数据存储库(MDR)是可用于研究以及医疗保健中的数据元素的数据库。这些数据元素不是实际的患者数据(事实),而是使用的变量或特征的完整定义,包括编码,测量单位,数据类型和其他方面。这里描述的项目的目的是评估更大的专家组可能的MDR的应用方案。重点不是特定的软件,而是对社区对这种数据元素数据库的基本期望。为了实现这一目标,设计了一个调查问卷,其中包含关于建立生物医学研究中的数据元素的一般方面的问题,以及关于必要的功能,所需内容,社区工作的工具以及数据质量的更具体的点元素。主要结果之一是用户更重视内容的质量,而不是实现其文档概念的效率。与此同时,他们认为使用现有软件系统的努力与利益相比过多,并担心使用他们的设计由第三方使用。

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