Protection of health data in the EU: the keys to understand it

Population growth and aging have implications for our health systems. Hence the need to move towards more targeted medicine, thanks to powerful tools such as artificial intelligence and data science.

This digital strategy is at the heart of the European health data space, officially launched in May 2022. Its objective: to ensure the exchange of this type of information and improve care while supporting research and policy development in the Member states.

But what kind of data are we talking about? This is information related to our health that is generated during a consultation with a doctor or during a hospital stay. This is called the primary use of health data.

Secondary use corresponds to the processing of aggregated data in order to provide better care, develop medicines or advance research.

In Paris, we are developing preventive medicine

In Paris, the Health Data Hub is among the most advanced examples of digital health infrastructure in Europe. The structure works with various actors in the health ecosystem and has launched a technological platform that allows the leaders of projects of public interest to access a large volume of relevant data.

“Artificial intelligence,” explains Cécile Roseau, data engineer at Health Data Hub, “it is to be able to go from a medicine that treats when you are already sick to a medicine that warns of the risks of a person being hospitalized and therefore does prevention”.

When it comes to bringing together health information from different countries, with different standards and languages, the challenge is finding a common coding. So it is necessary to proceed in two stages according to Lorien Benda, open science project manager at Health Data Hub: “The first step will be to have a common data model. The second will consist of establishing a common vocabulary: it would be a bit like constructing a sentence, that is, all countries should agree to use a subject-verb-object or subject-object-verb construction”, she explains.

safe bubbles

The creation of gateways between databases is one of the missions of the European health data space, but the exchange of confidential information requires a high level of security. The French Data Hub applies strict IT protection standards to prevent access to personal patient data.

“At no time do we have the right to directly access identifying data”, emphasizes Emmanuel Bacry, scientific director of the Health Data Hub. “We open secure bubbles for each research project that operates on our platform. They are totally sealed bubbles from each other, totally independent in which researchers have access only to the pseudonymous data they need.” indicates.

Finland has an authority for access permissions to this type of data

Finland can boast of being home to another successful example of health data management. This is Findata, the Finnish licensing authority for health and social data.

The agency is responsible for allowing promoters of projects of public interest to access these databases for secondary purposes and guaranteeing the security of the information.

“We grant licenses to use health data in research, but also in education, development, innovation or policy making.” lists Johanna Seppänen, director of Findata.

“We have a contact point in Finland,” She continues, “where you can find out about the quality of the data, its availability, how much you will have to pay and everything you need to know to plan your research”.

The development of the European health data space to which Findata and the Health Data Hub contribute should see a breakthrough in September 2022 with the launch of its pilot version. This will monitor the cross-border use of health data on specific topics such as cancer, rare diseases and care pathways.


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