We Are: Empowering Citizens Through Secure Health Data Sharing

What is We Are? 

We Are is a partnership between Domus Medica, VITO (Flemish research centre), Vlaams Patiëntenplatform vzw and Zorgnet Icuro. Together we form a sustainable civil-scientific ecosystem for personal health data. Currently our main beneficiaries are citizens who benefit from feeling more involved and confident in sharing their data.

However, We Are also benefits application developers who use this data to give personalised advice as well as research organisations and government bodies. Our ‘quadruple helix’ model involves people, companies, governments and researchers who all work together and benefit from a standardised approach to handling data. 

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The link between We Are and the 8 CTPs: 

The idea for We Are began when I was working at VITO in 2018, where we discussed how to adopt a more citizen-centric approach to sharing health data. This sparked conversations with collaborators and led to a consortium that focused on giving citizens control over their health data, especially personal details not typically found in medical records, such as lifestyle and mental health data that supports preventative care (CTP 1, CTP 8). Eventually, we officially secured funding in 2022. 

“We questioned who should OWN health data?”
Elfi Goesaert
R&D Professional in Data-Driven Health Promotion at VITO

Now established, the We Are  project consists of multiple layers. At our core, is our collaboration with athumi - a data utility company offering personal data vaults where we store our users’ data. Our second layer involves our applications that enable people to interact with their data, make informed consent decisions, and understand who can access their information (CTP 3). Finally, our third layer is governance which provides legal and ethical checks for applications requesting data access (CTP 6, CTP 7). This "trust layer" ensures all data requests are vetted, so people know their shared data is secure.

Our main focus is to create an integrated ecosystem by engaging stakeholders through workshops, co-creation sessions, panels, and interviews to clarify their roles (CTP 2, CTP 6). To this end, we prioritised interoperable technologies, ultimately choosing Solid for its international standards and compatibility with FHIR to ensure we move beyond simple PDF exchanges to true interoperability.

Through informed consent, we ensure individuals understand what it means to share their data stored in personal data vaults (CTP 3). Additionally, our partnership with ToMe allows our UX experts frame questions and provide clear information. Our project maintains strict security and access management protocols and  requires explicit consent before anyone accesses personal data. One of the project’s  goals is to leverage this data for both individual benefit and population health insights, demonstrated by our collaboration with the Flemish Patient Platform on hospital care quality using survey data (CTP 4).

To address digital health equity, we conduct co-creation sessions with vulnerable populations and run a Ph.D  program to explore better engagement strategies (CTP 5); the promotion of digital literacy is one of our key priorities. Participatory governance is also central to our approach and we are establishing a nonprofit cooperative as a legal entity to ensure the project's long-term sustainability and citizen involvement in governance (CTP 2, CTP 6). This will help the initiative evolve into a self-sustaining organisation independent of external influences. 

“In digital applications, it’s crucial to balance innovation with usability.”

Quality assurance is essential, and ToMe aids in user testing while we monitor technological developments to enhance our tools (CTP 7). We engage with a diverse range of stakeholders, including partners in Finland and the MyData organisation, to align innovation with societal frameworks and support a citizen-centred model.

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Challenges

Our most significant challenge was to find the right use cases to demonstrate the project’s benefits. Another challenge was achieving full operational capability for the data vaults, which took longer than expected. Now, the challenge is to scale up and show citizens the tangible benefits of sharing their data.

In the future, we hope the 8CTPs  will  extend beyond healthcare. While often seen as health-specific, we believe the 8CTPs can serve as a general framework for any technology handling personal data, offering guidance on citizen engagement and compassionate data management (CTP 8).

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