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Simple Management of High Assurance Data in Long-Lived Interdisciplinary Healthcare Research: A Proposal

  • Tiziana Margaria
  • Barry D. Floyd
  • Rodolfo Gonzalez Camargo
  • Anna-Lena Lamprecht
  • Johannes Neubauer
  • Marilia Seelaender
Part of the Lecture Notes in Computer Science book series (LNCS, volume 8803)

Abstract

Healthcare research data is typically produced, curated, and used by scientists, physicians, and other experts that have little or no professional affinity to programming and IT system design. In the context of evidence-based medicine or translational medicine, however the production, reliability, and long term availability of high quality and high assurance data is of paramount importance. In this paper we reflect on the data management needs we encountered in our experience as associated partners of a large interdisciplinary research project coordinated at the Cancer Metabolism Research Group, Institute of Biomedical Sciences at University of São Paulo in Brazil. Their research project involves extensive collection of detailed sample data within a complicated environment of clinical and research methods, medical, assessment, and measurement equipment and the regulatory requirements of maintaining privacy, data quality and security.

We use this example as an illustrative case of a category of needs and a diversity of professional and skills profiles that is representative of what happens today in any large scale research endeavor. We derive a catalogue of requirements that an IT system for the definition and management of data and processes should have, how this relates to the IT development and XMDD philosophy, and we briefly sketch how the DyWA + jABC combination provides a foundation for meeting those needs.

Keywords

Cancer Cachexia Simple Management Translational Medicine Model Drive Development Model Drive Development 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Tiziana Margaria
    • 1
  • Barry D. Floyd
    • 2
  • Rodolfo Gonzalez Camargo
    • 3
    • 5
  • Anna-Lena Lamprecht
    • 1
  • Johannes Neubauer
    • 4
  • Marilia Seelaender
    • 3
  1. 1.Chair Service and Software EngineeringUniversity of PotsdamGermany
  2. 2.Orfalea College of BusinessCalifornia Polytechnic State UniversityUSA
  3. 3.Cancer Metabolism Research Group, Institute of Biomedical SciencesUniversity of São PauloBrazil
  4. 4.Chair Programming SystemsTU DortmundGermany
  5. 5.Chair Biochemistry of Nutrition I, Institute for Nutritional SciencesUniversity of PotsdamGermany

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