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New non-profit organisation to help usher in EU’s networked and harmonised health data space

EHDEN generates evidence for diseases and treatments using a network of nearly 100 data partners and over 400 million electronic health records

17 September 2021
Data wave by Aleutie via Shutterstock
Image courtesy of Aleutie via Shutterstock

While providing routine patient care, hospitals and doctors collect huge amounts of ‘real-world’ healthcare data which could be immensely valuable for research into future treatments. However, often this data has not been collected to agreed-upon standards, which makes any attempt to combine or compare the datasets a lot of work.

The EHDEN project has a vision of the future wherein this real-world data can be used by the healthcare community to quickly generate high-quality insights that can improve patient care. Through a network of 98 data partners, the project has harmonised more than 400 million health records, transforming data from disparate databases to a ‘common data model’. This valuable resource has already been used to generate evidence on COVID19 vaccines and potential treatments, diabetes, and other indications.

At the mid-point of the project, the partners have announced the creation of a new organisation that will support research carried out by the partners in the EHDEN network and the wider research community beyond the lifetime of the IMI-funded project. It will support studies into more diseases and new treatments through study-a-thons and research programmes, continue work on methodological and technical developments of the data and analytics infrastructure, ensure new data partners can join, and further grow the ‘EHDEN Academy’ , which is a free training programme initially developed to train and certify data harmonisation SMEs, but has now been expanded to also include a variety of analytical courses, too.

The new entity is being launched as a not-for-profit incorporated in the Netherlands, transitioning the project into a long-term sustainable operation from 2024.