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500 million records, from patients in 27 countries, being harmonised and readied for real-world research

The EHDEN project’s recent call for more data made a specific appeal for cancer and immunology records, as well as partners from underrepresented countries

11 January 2022
Hospital health workers preps for surgery. Image by wavebreakmedia via Shutterstock
The goal of EHDEN is to make the large-scale analysis of health data in Europe a reality. Image by wavebreakmedia via Shutterstock

The big data project EHDEN is harmonising as much patient data as possible in order to help the research community answer research questions. To do so, they issue regular calls looking for hospitals and other sources of patient data to join them as data partners. In their most recent call, they managed to expand their network by 50%, adding 49 new partners and 60 million records.

This brings their total number of individual records to nearly 500 million. 

All the healthcare data in the world has little value unless it can be standardised, shared and analysed to generate real-world evidence. The project has issued a number of calls since it launched in 2018, inviting different data custodians (usually hospitals and other healthcare settings) to join the federated network. A group of 47 trained and certified SMEs in 19 countries are tasked with formatting the data – which remains under the complete control of the original owner – to a common data model so that large-scale analysis can be performed on it.

Some recent examples of this analysis include an assessment of the safety of drugs repurposed for the treatment of COVID-19, including hydroxychloroquine and the safety of COVID-19 vaccines. Another case study looked at the pros and cons of knee replacement surgery implants.

This kind of analysis, which EHDEN has sometimes conducted as part of what they call study-a-thons or hackathons, has the potential to significantly cut some of the inefficiencies of clinical trials and supercharge research. As it’s such a developing field, however, issues concerning combining and safeguarding data from such diverse sources, and all the quality inconsistencies that come with it, still need to be ironed out. These challenges are another focus of EHDEN's work.

Cancer focus

While EHDEN’s earlier calls were generic (apart from a specific COVID-related call in 2020), the most recent calls sought new cancer- and immunology-related data partners, resulting in 11 new partners working in the oncology field. Cancer is an important unmet societal need and a policy priority for the EU, and EHDEN’s efforts fit neatly with the European Commission’s Beating Cancer Plan, and with the objective of the European Health Data Space to promote better exchange and access to different types of health data.

This time, the project leaders also wanted to focus on countries that are underrepresented in the network, and welcomed the Czech Republic, Republic of Ireland, Lithuania and Montenegro to the network in this last call.

The partners that join EHDEN’s network do so because it allows them to participate in large studies, and to make better use of their own data. EHDEN has produced a number of tools that allow them to use their own data and visualise it in a standardised format. A survey of data partners carried out by the project listed being part of a community, being part in international studies, and improving interoperability as the top three draws of joining.

EHDEN is supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.