Navigating legal constraints in clinical data warehousing: a case study in personalized medicine

Personalized medicine relies in part upon comprehensive data on patient treatment and outcomes, both for analysis leading to improved models that provide the basis for enhanced treatment, and for direct use in clinical decision-making. A data warehouse is an information technology for combining and...

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Published in:Interface focus 2013-04, Vol.3 (2), p.20120088-20120088
Main Authors: Jefferys, Benjamin R., Nwankwo, Iheanyi, Neri, Elias, Chang, David C. W., Shamardin, Lev, Hänold, Stefanie, Graf, Norbert, Forgó, Nikolaus, Coveney, Peter
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Language:English
Subjects:
Clinical Data Warehouse
Legal And Ethical Constraints
Personalized Medicine
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cited_by cdi_FETCH-LOGICAL-c562t-4fd02d12de2a40aca5a24337e0151718f801fcd4cc44b3dcf9bcec55642ce4383
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creator Jefferys, Benjamin R.
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description Personalized medicine relies in part upon comprehensive data on patient treatment and outcomes, both for analysis leading to improved models that provide the basis for enhanced treatment, and for direct use in clinical decision-making. A data warehouse is an information technology for combining and standardizing multiple databases. Data warehousing of clinical data is constrained by many legal and ethical considerations, owing to the sensitive nature of the data being stored. We describe an unconstrained clinical data warehousing architecture, some of the legal constraints that have led us to reconsider this architecture, and the legal and technical solutions to these constraints developed for the clinical data warehouse in the personalized medicine project p-medicine. We also propose some changes to the legal constraints that will further enable clinical research.
doi_str_mv 10.1098/rsfs.2012.0088
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source PubMed Central(OpenAccess); Royal Society Publishing Jisc Collections Royal Society Journals Read & Publish Transitional Agreement 2025 (reading list)
subjects Clinical Data Warehouse
Legal And Ethical Constraints
Personalized Medicine
title Navigating legal constraints in clinical data warehousing: a case study in personalized medicine
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