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

Authors:
Bernice S. Elger;Jimison Iavindrasana;Luigi Lo Iacono;Henning Müller;Nicolas Roduit;Paul Summers;Jessica Wright
Affiliations:
University of Geneva, Switzerland;University of Geneva, Switzerland;NEC Laboratories Europe, Germany;University of Geneva, Switzerland and University of Applied Sciences Western Switzerland, Sierre, Switzerland;University of Geneva, Switzerland;University of Oxford, England, United Kingdom;University of Sheffield, England, United Kingdom
Venue:
Computer Methods and Programs in Biomedicine
Year:
2010

Citing 4
Cited 4

Handbook of Applied Cryptography

Handbook of Applied Cryptography
Keyed Hash Functions

Proceedings of the International Conference on Cryptography: Policy and Algorithms
How (not) to protect genomic data privacy in a distributed network: using trail re-identification to evaluate and design anonymity protection systems

Journal of Biomedical Informatics
@neurIST - Towards a System Architecture for Advanced Disease Management through Integration of Heterogeneous Data, Computing, and Complex Processing Services

CBMS '08 Proceedings of the 2008 21st IEEE International Symposium on Computer-Based Medical Systems

Coordinating e-health systems with TuCSoN semantic tuple centres

ACM SIGAPP Applied Computing Review
An enhanced approach to supporting controlled access to EPRs with three levels of identity privacy preservations

USAB'11 Proceedings of the 7th conference on Workgroup Human-Computer Interaction and Usability Engineering of the Austrian Computer Society: information Quality in e-Health
Medical (visual) information retrieval

PROMISE'12 Proceedings of the 2012 international conference on Information Retrieval Meets Information Visualization
Five-year experience with setup and implementation of an integrated database system for clinical documentation and research

Computer Methods and Programs in Biomedicine

Quantified Score

Hi-index	0.00

Visualization

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.