Adaptations of Personal Health Record Platform for Medical Research on Chronic Diseases

Abstract

The article reports on experiences in e-Health platforms and services for supporting medical research into the causes and relationships among physiological parameters and health problems concerning different chronic diseases. The Personal Health Record (PHR) is a way of standardizing electronic management of medical information between patients and their physicians, including medical bodies collaborating in providing integrated medical care services. We describe roles and aims behind electronic health records, follow with applicable legal and standardizations frameworks and relevant European activities, leading to the presentation of common commercial and open-source implementations of such systems, concluding with the indication of specific adaptations enabling a use of stored personal health data for scientific research into causes and evaluation of chronic illnesses. We describe ethical and privacy concerns that are relevant to using and exchanging electronic health information.