A plea for 'true consent'

An app that gives you a signal when you come close to someone who is infected? Voluntary access to the location of the phone? The public doesn't like it. Not even if it could save lives. The reluctance to impose the sharing of personal information is detrimental to innovation. In our current system, innovation and ethics seem difficult to reconcile. Often they even appear to be diametrically opposed to each other.

The tip of the iceberg

Corona only shows the tip of the data iceberg. Data from citizens, consumers and patients are continuously collected by government for policy making, by companies for new product development, marketing and sales, by hospitals, universities and knowledge centres for research and innovation.

The smart use of data leads to new insights, valuable innovation processes, even better medicine and healthcare. Big data will help us better understand who is at risk of which disease and who benefits from which treatment.

Management and control

Problem: Whoever collects the data today also manages and controls it and rarely shares it with others; there is little transparency about what happens to it. De facto, the data collector is the owner and manager of that data. Even though the law may stipulate otherwise.

The legislator pretends to protect the citizen, patient or consumer. It even gives them the rights to use their data themselves. But only rarely do the persons to whom the data relates gain real control over their own data. After all, the interests lie elsewhere. The business model of the data collector is not served by relinquishing control. The current technological ecosystem is not adapted to it. And most citizens and patients would - so to speak - not be ready for it.

What do the data collectors themselves think?

What do people who, willingly or unintentionally, provide data themselves think about the protection they receive and about what others do with that data? A civil forum organised by the King Baudouin Foundation and Sciensano in 2018 on the use of genome information shows that in practice an overwhelming majority is willing to share health data - and even data about their DNA - for scientific research. On condition that society benefits from this.

However, citizens do want to retain control over the use of these data. He or she demands transparency, traceability and feedback. Citizens also want to know who uses their data, for what purposes and with what results. And if individual citizens or patients have the impression that their trust is being abused, they want the right to withdraw their data.

The King Baudouin Foundation, VITO, VPP, Domus Medica and Zorgnet-Icuro argue in favour of increasing citizens' and patients' trust in datascience. We want to do this by giving them ownership of their own data and by actively involving them in decisions concerning the management of that data. This gives citizens the guarantee that they can safely share their data as a lever for personal well-being and the public interest.

Citizens need truly informed choices

In order to achieve this, we need to make a number of far-reaching changes. For example, the current 'disclaimers' and 'informed consents' for data collection and data sharing aim to comply with legislation and avoid government sanctions. We need to ensure that people can make real informed choices about data sharing autonomously. That they are given the opportunity to give true consent. And that they are given the opportunity to enrich data about themselves in a natural way.

Is it feasible?

Admittedly, that will require a substantial increase in the digital competences of the average citizen, but also in his or her health literacy and willingness to participate. An impossible task? Of course not, because who would have dared to think six months ago that our children would be taught online and that Mom and Dad would work from home via digital platforms? If all that is possible in a few days' time, citizen-centric data management - in EU terms 'citizen-centric data management' - does not have to be a utopia. Certainly not in areas that really matter to everyone, such as health and welfare care, preventive health, personalised medicine, and so on.

However, it will require a new kind of cooperation, an innovative ecosystem with adapted policies and through the participation of all stakeholders, including patients and citizens. A system in which they, as providers of data, are no longer passive and suffering objects, but recognised and active participants. In which they contribute to research and innovation as fully-fledged partners.

Mutual trust is the key element

Mutual trust is the key element in such a partnership. Real consent forms the basis of data sharing. The possibility to receive feedback is ingrained in the system, as is the flexible adaptation of previously given consents.

In short, if you want a future in Belgium and Europe with datascience and data-driven innovation, with respect for privacy, then give citizens control over their own data.

Prof. Dr. Jef Hooyberghs, VITO research leader

Jef Hooyberghs holds a Master's degree and a PhD in Science (KU Leuven and UHasselt). At KU Leuven he studied complex systems as a postdoc, a scientific approach that drove him to life sciences. In 2003 he started as a data scientist at the Flemish research centre VITO where he researched the possibilities of artificial intelligence in predictive modelling. Since 2006 he has also been a part-time professor at UHasselt and is affiliated with the University's Data Science Institute. He has 50 peer-reviewed papers and 9 patents to his name. At VITO he is both research leader and founder and head of the Data Science team where data-driven research is applied to accelerate the transition to a sustainable society.

Co-authors of this blog

Ilse Weeghmans, director of the Flemish patient platform
Roel Van Giel, Chairman Domus Medica
Margot Cloet, Managing Director Zorgnet-Icuro
Gerrit Rauws, director of the King Baudouin Foundation