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Title of the item:

Strategies for health data exchange for secondary, cross-institutional clinical research

Title :
Strategies for health data exchange for secondary, cross-institutional clinical research
Authors :
Elger, Bernice Simone
Iavindrasana, Jimison
Lo Iacono, Luigi
Muller, Henning
Roduit, Nicolas
Summers, Paul
Wright, Jessica
ISSN: 0169-2607 ; Computer Methods and Programs in Biomedicine
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Subject Terms :
Access to Information/*ethics
Biomedical Research
Computer Security
Computer Systems/ethics
Informed Consent
Medical Records Systems
Research Design
Source :
ISSN: 0169-2607 ; Computer Methods and Programs in Biomedicine, Vol. 99, No 3 (2010) pp. 230-251.
Publication Year :
Collection :
Université de Genève: Archive ouverte UNIGE
Document Type :
article in journal/newspaper
Language :
Relation :
info:eu-repo/semantics/altIdentifier/pmid/20089327; unige:20922;
Availability :
Rights :
Accession Number :
Academic Journal
Secondary use of health data has a vital role in improving and advancing medical knowledge. While digital health records offer scope for facilitating the flow of data to secondary uses, it remains essential that steps are taken to respect wishes of the patient regarding secondary usage, and to ensure the privacy of the patient during secondary use scenarios. Consent, together with depersonalisation and its related concepts of anonymisation, pseudonymisation, and data minimisation are key methods used to provide this protection. This paper gives an overview of technical, practical, legal, and ethical aspects of secondary data use and discusses their implementation in the multi-institutional @neurIST research project.

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