When the EU’s Innovative Medicines Initiative launched the five-year EHDEN project in November 2018, it did so with an overarching goal in mind: to significantly improve patient treatment and care by unlocking the under-utilised and transformational potential of real world data. To this end, EHDEN began its journey to provide a new paradigm for the discovery and analysis of health data in Europe, by building a large-scale, federated network of data sources standardised to a common data model. More specifically, it set out to:
- Harmonise in excess of 100 million anonymous health records to the OMOP Common Data Model (CDM), supported by an ecosystem of certified SMEs (Small and Medium Sized Enterprises)
- Impact our understanding and improvement of clinical outcomes for patients in the many diverse healthcare systems within the EU
- Establish a self-sustaining open science collaboration in Europe to support academia, industry regulators, payers, government, NGOs and others
- Expand training and education by offering free, online courses via the EHDEN Academy
Three years on, EHDEN has made significant headway, and has already eclipsed many of its targets, and this in the face of the COVID-19 pandemic, whereby travel restrictions limited face-to-face collaborations and working.
- Now working on harmonising ~500 million anonymous health records to the OMOP CDM, with 140 Data Partners in 26 countries after 5 open calls (Data Partner overview here)
- EHDEN has certified 47 SMEs in 19 countries after 3 open calls (Catalogue here)
- Evidence generation of ~40 publications, study-a-thons and use cases to date (more here)
- EHDEN Academy being used in >60 countries worldwide with ~1400 enrolled and ~1800 courses completed to date, with 14 courses online
- Ongoing development of the technical architecture of the project, in particularly the EHDEN Portal
- Great progress on methods and analytical tool development as well as use case progress across drug utilisation, safety, HTA and predictive analytics
- Setting up a new EHDEN not-for-profit legal entity to support in parallel longer term sustainability beyond the IMI phase (2024+)
Read more on the project's first three years of progress and achievements here, but below are some extracted quotes:
“EHDEN has excelled in the first half of the project. By building a network with 143 Data Partners across Europe and training researchers to use it, EHDEN has already provided important evidence to improve patient care. We are really looking forward to even greater success as the project continues to empower the digitisation of healthcare research.”
“EHDEN is a great illustration of why collaboration is essential in setting up the European Health Data Space(s). Thanks to its collaborative approach, EHDEN builds scalable infrastructures and lays foundations for future healthcare research that meet the imperatives of public and private sectors and of the patients at the same time. EHDEN is not just an aspiration; through concrete use cases it is actively contributing to resolving public health challenges."
“EHDEN provides us with the opportunity to join a team of pioneers when it comes to overcoming socio-technical challenges that arise when scaling-up health data. It feels like coming home for us."
Liesbet M. Peeters
“EHDEN offers valuable resources, networking events and training materials. As an SME deeply involved in the EHDEN community, what you don’t do is as important to your success as what you do."