Launched in 2019 by VITO, the Vlaams Patiënten Platform (Flemish Patient Platform), Zorgnet Icuro and Domus Medica, We Are is currently at a turning point. Following a pilot phase, the platform is now entering an operational phase, one that will also create opportunities for citizen science. We Are is not only aimed at citizens who want greater control over their own health, but also at healthcare professionals looking to provide personalised care, companies seeking to innovate with relevant data, researchers aiming to accelerate targeted and responsible research, and policymakers who want to align policies with citizens' needs. In short, anyone who wants to work responsibly with health data.

Individual dashboard

You emphasise that citizens need to reclaim control over their health data. Are we as citizens too trusting when using health apps? 

Erik Laes: “As users, we often accept all terms and conditions without a second thought because we want access to the app's full functionality. As a result, our health data ends up with individual companies or organisations. You can really think of it as separate silos where our data is stored. What's more, we often don't know who can access that data or how it is being used. This creates distrust and leads to missed opportunities.

At We Are, we believe every citizen should be able to manage their own personal data vault and decide for themselves with whom they share their health data. We Are serves as a secure digital hub that allows you to make data from official sources, such as hospital records or your electronic health record, as well as wellbeing data relating to sleep, physical activity or nutrition, available in a controlled way to applications that combine and translate this information into personalised insights. On the one hand, this helps people take targeted preventive action around conditions such as diabetes, cancer or cardiovascular disease, reducing pressure on the healthcare system. On the other hand, it gives citizens meaningful control over how their personal data is stored and shared. The choice remains entirely yours. By bringing data together in one place, connecting it and sharing it according to your own preferences, it gains meaning."
 

Explicit consent

So as a citizen, you can decide to share your data with healthcare providers, researchers or developers of health apps?

Erik Laes: "If you want, your data can be used securely, transparently and for clearly defined purposes, whether that's for personalised care, meaningful research, effective policymaking or innovations that contribute to quality of life and/or societal progress. For example, we aim to complement existing official health data systems. But we also see opportunities for smaller innovative companies active in the healthcare sector. The ecosystem that surrounds them is growing and by giving them access, they can work with real-world data within a secure legal framework. The key to all of this, of course, is trust and the explicit consent of citizens."

Is the platform currently ready for use?

Erik Laes: "Until recently, the platform was still in its pilot phase, but we are now ready to roll out the operational phase. Through an Interreg project with the Netherlands, we gave a number of apps access on a small scale to the data of around 100 to 200 participants during the pilot phase. Alongside the technical ICT development, we have established a governance structure that also includes citizen panels. In order to find out if an app can gain access to the data, we do a legal and an ethical screening. The ethical assessment looks, among other things, at the app's inclusiveness and societal value. The citizens participating in our panel will be well prepared, as they receive dedicated training in data management beforehand."
 

We Are Foundation

How do you see the link with citizen science?

Erik Laes: "In one sense, the connection is obvious: we give citizens the keys to their own data and involve them directly in our ethical screening process. But beyond that, we want to evolve towards a broader ecosystem of stakeholders around the platform. These stakeholders include trusted civil society organisations and healthcare institutions, but also citizen science initiatives, set up by citizens themselves. Some initiatives, such as mapping air pollution, think of CurieuzeNeuzen Vlaanderen (in Dutch), or monitoring noise levels, such as in the citizen science project De Oorzaak (in Dutch), are closely linked to health and therefore highly relevant to our platform.

In the short term, we intend to embed We Are within a foundation. Over the long term, that foundation could, for example in collaboration with Scivil, stimulate and initiate citizen science projects itself. In this way, we hope to develop a platform that reflects what people genuinely want and need. That is why we invite citizens not only to manage their data, but also to help shape which health questions should be investigated, which initiatives deserve support, and how health data can be used responsibly for the benefit of society as a whole."