Healthcare data are very fragmented. Even data within one healthcare centre are typically spread across different repositories. Across entities, different standards are used to code diagnosis, lab results, drugs or procedures. In most healthcare systems, a majority of the core clinical data is buried in unstructured (text) notes, making data analysis even more challenging.
The EHDN will provide a harmonised model to address the structural heterogeneity and the use of different coding standards, expediting efficiencies in the research process
Besides the technical heterogeneity amongst data sources, a similar diversity in governance processes to perform studies using data collected by healthcare providers, can be seen.
The EHDN will specifically seek to provide a pragmatic governance framework that can be used to accommodate cross-centre studies, within the confines of societal parameters that manage data use in the EU.
The first goal of the EHDN is to ‘reduce to practice’ the approaches pioneered in these earlier research projects and develop a standard methodology.
The second goal of EHDN is to help mature both the supply side and the demand side of this ‘health data eco-system’ in compliance with robust privacy and ethics governance.
The third goal of EHDN is to stimulate development of new and augmented health services through available and expanded technologies, in the interest of health outcomes.
The EHDN project aims to improve Europe's (technical) capabilities to undertake systematic health outcomes research at an unprecedented scale across the entire region..
The aim of the EHDN is to not just create a network of data providers that are making data available, but also to facilitate further research that will allow these data providers to gain additional value while working towards a value based outcome mandate.
Data providers should find it easier to also participate in other future research studies.
This project should therefore also result in an increased use of outcomes based models in actual healthcare delivery and regulatory/HTA decision making