User Expectations of Metadata Repositories for Clinical Research

Abstract:

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.

LHA-ID: 7QGX8EWF4R-7

Projects: Evaluation Metadata Repository

Journal:

Human Diseases: No Human Disease specified

Citation:

Date Published: 9th May 2018

Author: Matthias Löbe

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Created: 6th May 2019 at 06:56

Last updated: 13th May 2019 at 11:27

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