Patient Identity Management for Secondary Use of Biomedical Research Data in a Distributed Computing Environment

Dealing with data from different source domains is of increasing importance in today's large scale biomedical research endeavours. Within the European Network for Cancer research in Children and Adolescents (ENCCA) a solution to share such data for secondary use will be established. In this paper the solution arising from the aims of the ENCCA project and regulatory requirements concerning data protection and privacy is presented. Since the details of secondary biomedical dataset utilisation are often not known in advance, data protection regulations are met with an identity management concept that facilitates context-specific pseudonymisation and a way of data aggregation using a hidden reference table later on. Phonetic hashing is proposed to prevent duplicated patient registration and re-identification of patients is possible via a trusted third party only. Finally, the solution architecture allows for implementation in a distributed computing environment, including cloud-based elements.