Health, innovation and privacy often seem difficult to combine. Worse still: in the current system, they are often in conflict, although this is rather because of how that system handles data. VITO's Data Science Hub is helping to build a society and economy in which data-driven research and innovation are encouraged – alongside respect for citizens' privacy.

The corona crisis really made this clear: without the active involvement or ‘empowerment’ of citizens, measures or solutions proposed or put forward by authorities serve little purpose. Take, for example, the discussions around the apps for containing the spread of the virus through contact tracing. It soon became clear that citizens are not unreservedly prepared to have their privacy restricted in exchange for digital aid. It exposed a wider and more fundamental problem that also occurs with the use of personal data beyond the corona context, namely that innovation and privacy are often difficult to reconcile within our present system.

Data monopoly versus open data

The cause of this problem lies in the manner in which data is collected, used and managed: now the online data economy has been almost monopolised by a few large tech giants, transparency is often lacking. Moreover, the data collectors are often – despite existing legislation – also the owners and managers of it at the same time. On top of this, different types of data streams are still running alongside each other far too often and are insufficiently linked, which then slows down innovation.

These flaws in data management not only impede crisis management in the health sector in corona times, but also block effective breakthroughs in other social fields such as the environment, economy, mobility and food security. It is these sore points that VITO is consciously attempting to remedy, given its major dedication to data-driven research in recent years. This is the focus at the Data Science Hub, a structure that strengthens data-driven research horizontally – read: across the various VITO themes. ‘Data-driven research could be considered the fourth paradigm of scientific research, alongside theory, experiment and computer simulation,’ says Jef Hooyberghs, research leader at the VITO Data Science Hub. ‘It's a new driver of the scientific process, using data collected or generated by people or computers.’ To VITO, one characteristic of data-driven research is that it is also socially engaged. ‘The collaboration with colleagues from the VITO Transition Platform means we're also working on embedding our activities within society right from the start.’

From smart islands to a smart region

VITO is also dedicating itself to data-driven projects as far as possible. One example is the Flemish Open City Architecture, or VLOCA. The goal to which this initiative aspires, which VITO is carrying out along with imec in close contact with a multitude of stakeholders, as commissioned by the Flemish Agency for Domestic Management, is developing a blueprint for making cities and municipalities in Flanders ‘smarter’ through digitalisation and better use of data. ‘Countless local authorities are already taking initiatives for this,’ says Hooyberghs, ‘and that brings the usual growing pains with it. There isn't yet a uniform way of working and, for smaller authorities, the resources to do this self-sufficiently are often lacking.’

Ultimately, VLOCA, which started early 2020, is intended to help Flanders evolve from a collection of smart islands to a sustainable, smart region. One of the project's strong aspects is that it is not tying itself to a particular discipline. ‘At VITO, we're working across the themes and the great thing is that the authorities are also combining policy fields that are often very important to local authorities, such as the environment, quality of life, governance and mobility,’ explains Hooyberghs. ‘All too often, the data that local authorities gather or generate through various separately developed applications is still to be found in separate silos, making it difficult to bring this together. We're aiming to merge them together through our vision of an open digital architecture.’

Innovation and health go hand in hand

While VLOCA mainly revolves around public data, the health world largely concerns personal data. The corona crisis offers an enlightening reflection here too. Hooyberghs: ‘Many agencies have been collecting data in the past few months: universities as part of online surveys, authorities to get the epidemic under control and keep it that way, companies for testing and development, etc. This was generally done with the best of intentions, but although the citizen is at the heart of this, they're nonetheless often left out in the cold. They don't know who is managing their data, where this is stored, what happens with it, who has access to this data, etc.’

In recent years, the idea of ‘giving the data back to the citizen’ has been steadily gaining ground’. The aim of this is not only to ‘empower’ the citizen. It also has economic advantages, as smaller companies have barely any access to data at present – meaning there is no room for competition. ‘By putting the citizen at the heart of this, we're creating a level playing field in which everyone does have economic opportunities’, assures Hooyberghs.

As regards to health data, the thinking in Flanders is largely moving in the right direction already. In May 2020, the first and second-line care with the GPs' syndicate Domus Medica and the care organisation Zorgnet-Icuro, the Flemish Patients Platform, the King Baudouin Foundation and VITO all joined around the concept of citizen-oriented data management. ‘The intention is to crystallise the principles that we've collectively agreed upon into practical policy over the coming years,’ says Hooyberghs. This process has already begun to translate into practical projects. At the European Smart Specialisation Platform, in which Flanders is focusing on personalised healthcare, VITO plays a leading role in designing the data management. In this context, VITO has been working with two other European regions on an innovative data concept since March 2020, in which the citizen plays a central role in the management of their own health data, and whereby innovation and health are not in conflict with one another, but in fact go hand in hand. ‘We're aiming to develop this concept into something that private companies will shortly see some investment potential in.’

As a practical application, VITO is digitalising a health guide, whereby the citizen makes their own decisions as to who they share their data with and what they use that data for themselves. This is taking place in collaboration with Domus Medica and the care innovation testing ground LiCalab, and with support from Empowercare, a European Interreg 2 Seas project. The advantage of the guide is not only that the citizen can monitor and enhance their health in an evidence-based manner via a personalised action plan, but that the data can also be used to improve policy or to help develop new health services for the citizen. That closes the circle.

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