Transparent Medical Data Systems

Abstract

Transparency is described as the quality to be open about policies and practices. It is intended to inform end users of what happens to their data. It promotes good quality of service and is believed to sustain people’s demand for privacy. However, at least for medical data systems, a clear definition of the property is missing and there is no agreement on what requirements qualify it. We look into this problem. First we identify concepts that relate with transparency: openness, empowerment, auditability, availability, accountability, verifiability. We discuss them in Health Information Technology, so clarifying what transparency is. Then we elicit a list of requirements that indicate how transparency can be realised in modern medical data systems such as those managing electronic health records.