Remarks by Vice-President Margaritis Schinas at the press conference on the European Health Data Space

Ladies and Gentlemen,

We are here today to present our proposal for a European Health Data space.

This is revolutionary and it comes at a time that makes a big difference for Europe.

Health Data is power and Health Data is the blood running through the veins in our healthcare systems.

Our proposal for a European Health Data space is the first of its kind worldwide.

It is a milestone for our digital transformation; a real revolution in European medical history. With our proposal today we are addressing important health inequalities allowing all Europeans to have equal use, equal access and equal rights.

And this also means that the more health data we have, the better diagnosis and more treatments we can obtain for challenging diseases like cancer or Alzheimer's.

The why of this proposal is obvious.

 We have an EU bank of data which is very rich, ultra-rich, but we are making an ultra-poor use of this wealth. We have difficulties for many citizens in exercising their rights over their electronic health data. We have uneven implementation and interpretation of these rules in different Member States. We have situations where natural persons cannot benefit from innovative treatments because of the lack of sufficient data.

Same thing for researchers and policy makers, we have different standards, we have limited interoperability, we have many shortcomings that we are correcting with the proposal that we are presenting today and there is no better timing for this than now. In this post pandemic world, now that we are switching from firefighting to construction work , constructing a true genuine robust European Health Union.

There is not only a health rationale, which is better diagnosis and better treatments, but there is also an economic rationale behind this proposal that can help bring significant savings. Just to give you an example, we spend 14 billion Euros for medical images in the EU and 10% of this is totally unnecessary because we don't have this common space that will rationalize this type of expenses.*

Concretely, we mainly have two strands of work in this proposal.

The first one is what we call the proposal for the primary use of health data.

This is when citizens will be able to access their own health data electronically in their language and share it with the doctor or the hospital of their choice.

This means in practical simple terms that one can be on holidays and still be able to process his or her data with his or her doctors. It goes without saying that all of us individuals will retain control of all the data we share. We will be able to add, request changes, restrict access or even track who visited our data.

Second, health data could be re-used for research, policy-making, or personalised medicine. This is the so-called secondary use and will give access to researchers, policy makers, those who innovate, these re-users will be able to access these data in a way that will optimize their operations but always in a close and secure environment fully anonymised and in full respect with our data protection rules and privacy requirements.

Every time that a proposal on data is presented there is a lot of excitement around. We understand that. But this is big. It is important, it is necessary, it's innovative and it comes at the right time.

The Commissioner and I, we were very lucky to have the full and unanimous backing of the College and the President for this proposal.

We have to make this work, we have to build this capital of trust that is always necessary when we discuss data space and I am sure that this will be the case.

* Updated on 3 May 2022 at 19:57.