Sharing personal data? We do it every day and more and more often. But what happens next with that data? Flemish Minister of Innovation Hilde Crevits is now co-investing in the development of an Interregional Platform for Personal Data containing a personal digital safe. Flemish Research Centre VITO is developing the system and is further developing it in a broader partnership.
"Privacy is the highest good, also online. We are increasingly aware of the value of data and our personal digital information. And that is a good thing. In order to give people safe access to their own digital data, we are now developing a digital safe. This way, you can decide at any time to whom or when you exchange your personal data."
Hilde Crevits
Digital data are a necessary source for innovation and economic growth. Everyone wants access to it. However, when it comes to truly personal data - such as health data - many people are sceptical. We are increasingly aware of our digital vulnerability and the enormous economic value of all that personal health data.
COVID-19 has made it clearer than ever that within the healthcare sector, efficient data sharing with an absolute guarantee of privacy will be crucial in the future. This is only possible if the citizen has confidence and is supported in the data management. More than that: the citizen who shares his data must have full control over his own data. To meet this need, we need an Interregional Personal Data Platform managed by a representative citizen organisation, independent of government or industry. In this platform, each citizen will have a personal data safe, to which only he or she will have the key.
In this way, citizens can make use of services - such as tailor-made health advice using this data - without having to worry about what will happen to their data. In his personal safe - a virtual 'locker' to which the individual has the key via an app - he only has to enter his data once. If necessary, he can decide which data he wants to share with which partner and in which way. Via the app on his smartphone, the citizen himself can easily tick options (see illustration).
The contents of these safes are, of course, also very interesting for researchers and developers. For example, lifestyle data is crucial for improvements in preventive healthcare. These innovations have enormous potential, but that data is currently underused or sometimes used for unknown purposes without the citizen's consent. By developing such a digital safe, this can be done in an ethical and legally sound way in the future.
Since 2018, Flanders has been the driving force behind the development of the interregional Personal Data Management Platform, an opportunity for citizens, government, innovators and industry. As a research centre, VITO is the international coordinator for Flanders, the East Netherlands and Oulu, Finland. In order to support this, Flemish Minister of Innovation Hilde Crevits provides a subsidy of 120,000 euros. VITO is mapping out which business models can best put the added value of this platform into practice. This is done in cooperation with the Flemish stakeholders to see how the multitude of applications that exist can be connected to this platform. This is done in cooperation with foreign regions because the knowledge of interregional similarities and differences is important in order to be able to work together without limitations.
More info: s3platform.jrc.ec.europa.eu/personalised-medicine
At the Flemish level, a partnership has been established in the course of 2020 between Domus Medica, Zorgnet Icuro, VITO, Vlaams Patiëntenplatform and the Koning Boudewijnstichting. They help design this platform which has to be ready by the end of 2021.
