Towards Citizen-Centered Data Management: VITO Vision Magazine Article 2020

Health, innovation and privacy often seem difficult to combine. Even worse, in the current system they are often in conflict with eachother, although this is rather due to the way in which the system deals with data. Through its Data Science Hub, VITO is working on building a society and econonomy in which data-driven research and innovation are stimulated - with respect for the citizens' privacy.

During the corona crisis, it became clear once again: without the active involvement or empowerment of citizens, measures or solutions proposed or put forward by governments make little to no sense. Take, for example, the discussions surrounding the apps to contain the spread of the virus through contact detection. It quickly became clear that citizens are not readily willing to have their privacy curtailed in exchange for digital help. It exposed a broader and more fundamental problem that also emerges in the use of personal data outside the corona context, namely that innovation and privacy are often difficult to reconcile within our current system. 

Data monopoly versus open data 

The cause of this problem lies in the way data is collected, used and managed: now that the online data economy is almost monopolized by a few big tech giants, transparancy is often lost. Furthermore, despite the existence of legislation, the data collectors are often also the owners and managers of the data. In addition to this, various types of data streams are still far too mixed up and insufficiently linked, which in turn stifles innovation. 

These data management deficiencies not only complicate crisis management in the health sector during the corona pandemic, they also impede effective breakthroughs in other societal fields such as the environment, economy, mobility and food security. These are obstacles VITO is consciously trying to overcome, now that they are also for several years strongly commited to data-driven research. This is the focus within the Data Science Hub, a structure that horizontally reinforces data-driven research. 'You can regard data-driven research as the fourth paradigm of scientific reserach, on top of theory, experiment and computer simulation', says Jef Hooyberghs, reseach director of the VITO Data Science Hub. 'It is a new driver of the scientific process through data collection or generation done by humans or computers.' Data-driven research, a key value of VITO, is also socially engaged. 'By collaborating with colleagues in the VITO Transition Platform, we are also working from the very beginning to embed our activities socially.'

From smart islands to a smart region 

VITO is also putting maximum effort into data-driven projects. One example is the Flemish Open City Architecture, or VLOCA. The aim of this initiative, which VITO is carrying out together with imec in close contact with a multitude of stakeholders on behalf of the Flemish Home Administration Agency, is to develop a blueprint that will enable cities and municipalities in Flanders to become 'smarter' through digitization and better use of data. 'Numerous local governments are already taking initiatives,' Hooyberghs says, 'and this is accompanied by the usual growing pains. There is no uniform way of working yet and smaller governments often lack the resources to do this on their own.'

Eventually, VLOCA, which started in early 2020, should help Flanders evolve from a collection of smart islands to a sustainable smart region. One of the strong aspects of the project is that it does not tie itself down to a particular field. 'We work across themes within VITO and the great thing is that governments also combine policy domains that are often very important to local governments, such as environment, quality of life, governance and mobility,' Hooyberghs says. 'The data that local governments collect or generate through various separately developed applications are currently still too often in separate silos, making it difficult to bring them together. Based on the vision of an open digital architecture, we want to merge them.'

Innovation and health: hand in hand 

While VLOCA is mostly about public data, the health world is mostly about personal data. Here, too, the corona crisis offers an enlightening reflection. Hooyberghs: 'A lot of institutions have collected data in recent months: universities in the context of online surveys, governments to get and keep the epidemic under control, companies to develop tests ... This was usually done with the best of intentions, but although the citizen is central, they are often left out in the cold. They do not know who manages his data, where it is kept, what happens to it, who has access to it ...'

In the last years, the idea of “giving the data back to the citizen” has been gaining ground. This does not only aim to “empower” citizens. It also has economic advantages, as smaller companies currently have little access to data - making competition impossible. 'By focusing on the citizen, we create a level playing field in which everyone does get economic opportunities,' Hooyberghs assures.

When it comes to health data, is Flanders already for a great part turning to the right direction. In May 2020, both primary and secondary care with general practitioner syndicate Domus Medica and care umbrella organization Zorgnet-Icuro and the Flemish Patients' Platform, the King Baudouin Foundation and VITO endorsed the concept of citizen-oriented data management. 'The intention is for the principles we have jointly agreed upon to crystallize into concrete policy in the coming years,' Hooyberghs said. This process is already translating into concrete projects. Within the European Smart Specialization Platform, in which Flanders focuses on personalized healthcare, VITO has a leading role in the design of data management. Within this context, since March 2020, VITO has also been working with two other European regions on an innovative data concept in which the citizen plays a central role in managing his own health data, and in which innovation and health are not in conflict but go hand in hand. 'We want to develop this concept into something in which private companies will soon see investment potential.'

As a concrete implementation, VITO is digitizing a health guide, where citizens themselves decide with whom to share their data and what to use it for. This is being done in collaboration with Domus Medica and care innovation laboratory LiCalab, and with support from Empowercare, a European Interreg 2 Seas project. The advantage of the guide is not only that citizens can monitor and strengthen their health evidence-based through a personalized action plan, but also that the data can be used to improve policy or to develop new health services for citizens. Thus coming full circle.