What electronic health records don’t know just yet. A privacy analysis for patient communities and health records interaction

The advent of Web 2.0 has resulted in the emergence of a new generation of user-centric applications. Healthcare too follows this trend and a whole range of health-related applications are being introduced. Electronic health record (EHR) systems are being developed to enable electronic storing and sharing of medical data between health practitioners. Recently, initial steps have been taken to evolve toward cross-border sharing of EHR data. Patients also become more involved in their healthcare and start storing their health data online in personal health record (PHR) systems or look for online support and medical advice from other patients with similar diseases or treatments. The consolidation of these different systems is described as a promising approach to bring healthcare to a higher level. A consequence of this evolution is the rise of new privacy threats to the patient’s medical data, as more data becomes easily accessible to more people. Not only the treating physicians have access to the health data, the patient himself will have direct access to it and even be in control of his data and the access to it. As a first step in the answer to this trend, this paper presents a legally-founded analysis of the privacy issues emerging from the integration of EHR and patient communities. First, a taxonomy of health data types and user roles that have a key role in integrated health record systems is proposed. Second, privacy-preserving access rights are discussed and a set of privacy-aware access levels are suggested. Finally, ethical, legal, and technically challenges are highlighted, and a set of high-level privacy-enhancing technical requirements are presented.