Architecture to Summarize Patient-Level Data Across Borders and Countries.
Translational medicine is becoming fundamental in promoting information flow between basic research and clinical practice, and in improving patients' health. The need for efficient systems to process and share information from multiple sources--including distinct areas of medicine--is a pressing need in biomedical research. Nevertheless, healthcare information systems are fragmented over different databases, medical institutions, and geographical locations. There are already several approaches to tackle this problem based on centralized or distributed solutions. Nonetheless, mainly due to privacy reasons, these models only work for specific silos. In this paper, we present a new ecosystem for connecting database owners and researchers. Our approach consists of gathering, via a common fingerprint, an extensive characterization of dispersed databases. This fingerprint typically contains high-level aggregated information addressing questions at a population level and allowing, for instance, quick identification of databases with data that may help to answer a specific research question. This work is being conducted in the context of EMIF (European Medical Information Framework), an IMI (The Innovative Medicines Initiative) joint undertaking funded project, wherein the Catalogue is being used to collect data from cohorts and Electronic Health Record systems of several European countries.
DETI/IEETA, University of Aveiro, Portugal.
Luís A
LA
Bastião Silva
Synapse Research Management Partners, Barcelona, Spain.
Carlos
C
Días
Erasmus University Medical Center, Rotterdam, Netherlands.
Johan
J
van der Lei
DETI/IEETA, University of Aveiro, Portugal.
José Luis
JL
Oliveira
D003219:Confidentiality; D057225:Data Mining / Q000379:methods*; D057286:Electronic Health Records / Q000458:organization & administration*; D005060:Europe; D033181:Information Dissemination / Q000379:methods*; D008498:Medical Record Linkage / Q000379:methods*; D017146:Models, Organizational; D057170:Translational Research, Biomedical / Q000458:organization & administration*