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Strategies for health data exchange for secondary, cross-institutional clinical research
Journal
Computer Methods and Programs in Biomedicine
Volume
99
Number
3
Pages / Article-Number
230-51
Mesh terms
Access to Information, ethics; Algorithms; Biomedical Research; Computer Security; Computer Systems, ethics; Confidentiality, ethics; Ethics, Medical; Humans; Informed Consent; Medical Records Systems, Computerized; Research Design
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.
