A second life for your health data? Share your views

The EU-funded project Towards the European Health Data Space (TEHDAS) launches a consultation for European citizens. We want to hear what you think about how your health data could be used in the future.

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

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 help save a loved one. That is why, in the future, we would need better access to data. Your privacy is secured as data is used in an unidentifiable way.  

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 diagnosis, finding 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.

Now we would like to hear what you think about how your health data could be used in the future: what purposes can 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, your rights and the safeguards protecting your privacy. You will also contribute to creating an ethical and societal framework for health data reuse which takes public preferences and values in consideration.

How will the results be used?

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

The consultation is available in English, French and Dutch. You can participate until 4th April 2022.

You can share your views here or using the button at the bottom of the page.