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

Bernice S. Elger, Jimison Iavindrasana, Luigi Lo Iacono, Henning Müller, Nicolas Roduit, Paul Summers, Jessica Wright

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish
Pages (from-to)230-251
Number of pages22
JournalComputer Methods and Programs in Biomedicine
Volume99
Issue number3
DOIs
Publication statusPublished - Sep 2010

Keywords

  • Clinical research
  • Consent
  • Health data
  • Pseudonymisation
  • Reasonable anonymisation
  • Secondary use

ASJC Scopus subject areas

  • Computer Science Applications
  • Software
  • Health Informatics

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