EHDEN

Project information: 

• Full title: European Health Data and Evidence Network (EHDEN)
• Duration: 65 months (1 November 2018 – 30 April 2024)
• Status: Ongoing
• Funding programme: Innovative Medicines Initiative 2 (IMI2; Grant Agreement 806968)

What will the project do?

• EHDEN project was launched as a public-private partnership to respond to the current challenges in generating insights and evidence from real-world clinical data at scale, to support patients, clinicians, payers, regulators, governments, and the pharmaceutical industry in understanding wellbeing, disease, treatments, outcomes and new therapeutics and devices..
• EHDEN is disease-agnostic and aspires to provide a new paradigm for the discovery and analysis of health data in Europe.

What are the expected outcomes? 

• EHDEN aims to develop a federated and equitable ecosystem of institutions generating clinical data, with researchers across academia and industry, supported by certified and qualified SMEs, harmonising clinical data and creating a network technology for real-world research. It will incorporate appropriate policy and regulatory requirements, such as the General Data Protection Regulation (GDPR) and ethical research guidelines, via privacy by design in its sociotechnical infrastructure.

EPF’s role

• Outcome driven Healthcare: EPF plays a role in qualifying the newly discovered methods or procedures that recently came into use for the Observational Medical Outcomes Partnership (OMOP) common data model.
• Personalized Medicine: EPF will contribute to several tasks including the identification of high-priority use cases as proof-of-concept of study execution. Major efforts will be spent on exploring guidelines and regulations for predictive model development, evaluation, and adoption; and on the development of educational and training material for the developed analytical tools.
• Outreach and sustainability: EPF will have a major involvement in this WP looking at the strategic engagement and buy-in of external parties, in the light of potentially controversial topics of high relevance for the audience. Should any ethical issues arise during the EHDEN project, then EPF will play an important role in analysing and remediating these. In addition, EPF will help to coordinate the production of educational and training material in synergy with WP3 and ensure transparency and openness of the project from a patient perspective.

Project aspirations

• EHDEN’s aspirations are significant, aiming to harmonise 100 million anonymised health records over five years across multiple hospitals, primary care networks, regional databases, and similar, while developing a durable and sustainable network of mutual research interests. During the project, numerous use cases will validate EHDEN’s work with a focus on health outcomes, measured by relevant health outcome standards.

Consortium

• EHDEN brings together 22 partners from across 12 countries.
• EHDEN project is a public-private partnership with eleven public partners, led by Erasmus Medical Centre, Rotterdam NL, and eleven pharmaceutical partners, led by Janssen Pharmaceutica, Belgium. 
• The consortium is evenly divided with eleven public partners, led by Erasmus University Medical Centre, The Netherlands, and eleven pharmaceutical partners, led by Janssen Pharmaceutica Nv, Belgium.