Published on 14.12.2021 14.12.2021

A second life for your health data? Share your views

The EU-funded project Towards the European Health Data Space (TEHDAS) is running a consultation for European citizens to find out what they think about how their health data could be used in the future.

Currently, your health data is mainly used and shared among healthcare professionals to provide care and the best possible treatment for you when you are sick. But it can also be used to help save a loved one and other people. That is why we will need to have better access to data in a safe environment that respects privacy.

Health data is indispensable for research to prevent and cure diseases and manage public health crises more effectively in the future. The more health data is available and accessible for analysis, the better researchers and decision-makers can develop tailored solutions, such as improving diagnoses and developing more efficient medicines with fewer side effects. By sharing your data in a secure and anonymised way today, you will also help yourself if you fall ill in the future.

We would like to hear what you think about how your health data could be used in the future. What should it be used for, by whom and for whose benefit? By participating in the online consultation, you will learn more about the use of health data and your rights and the safeguards for protecting your privacy. You will also be helping create an ethical and social basis for secondary use of health data in Europe that takes account of public preferences and values.

How will the results be used?

It is currently difficult to share health data across borders, even in emergencies. The EU aims to create an internal market for health data to ensure the secure flow of such data in Europe. The wider use of data boosts European innovations in the health sector thereby developing effective healthcare for European citizens. The results of this consultation will support recommendations made by the TEHDAS project to the European Commission and to the member states on how the public should be involved in health data use and sharing.

The consultation is being organised by three TEHDAS partners: public health research institute Sciensano (Belgium), Health Data Hub (France) and the NHS Confederation (United Kingdom).

The consultation is available in English, French and Dutch. The consultation runs until 8 May 2022.

Reply to the consultation

The news item has been updated. The consultation has been extended until 8 May 2022.