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

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.

Multi-centric universal pseudonymisation for secondary use of the EHR.

This paper discusses the importance of protecting the privacy of patient data kept in an Electronic Health Record (EHR) in the case, where it leaves the control- and protection-sphere of the health care realm for secondary uses such as clinical or epidemiological research projects, health care research, assessment of treatment quality or economic assessments. The paper focuses on multi-centric studies, where various data sources are linked together using Grid technologies. It introduces a pseudonymisation system which enables a multi-centric universal pseudonymisation, meaning that a patient's identity will result in the same pseudonym, regardless of which participating study center the patient data is collected.