A proposal of architecture to share patients data out of healthcare settings for research purposes

摘要

The emerging of new Information and Communications Technologies (ICT), the aging population and the increased number of people suffering from chronic diseases are changing the health structure of developed countries. Given this situation, it is crucial that research based on demographics data is promoted and researchers can access large amounts of patient data, having this information validated by medical institutions. Currently, there are some platforms and web applications available that allow patients the self-management and control of their health and wellness information. Other platforms allow managing large amounts of patient data (demographic, diagnostic, laboratory and medication) and share patient cohorts considering different criteria of inclusion and exclusion. This paper proposes to use a selection of these platforms and it defines how to relate them to obtain a framework where the information provided by patients and medical institutions can be safely used and validated by researchers. Furthermore, the system will enable clinical researcher to share the results of their research in a controlled and safe environment.