Some data assets can generate collective benefits and should be recognized as a public good, argues Barbara Prainsack, professor at the University of Vienna and director of the Centre for the Study of Contemporary Solidarity (CeSCoS). She explains why the European Health Data Space (EHDS) missed the opportunity to embed this principle, leaving space for tech giants to continue hoarding and monetizing health data with little public return.
Why is data solidarity so crucial for health data governance, especially in a European context?
Data solidarity reflects core values embedded in the European project, such as social justice, collective responsibility, and democratic participation. Health data is not merely a private asset but also a collective resource: its value emerges and grows when it is aggregated, compared, and reused across contexts. Data solidarity acknowledges that while individual patients should have rights over their data, the governance of data must also consider how data use affects others and society at large. This means shifting from a narrow focus on individual control to a broader commitment to creating public value, ensuring fairness, as well as preventing and mitigating harm.
Data solidarity insists on trying to distribute the benefits and risks in our digital society more equitably, both within individual societies and across the globe.
European Health Data Space (EHDS) does not integrate data solidarity principles. What, in your view, are the most significant missed opportunities in the EHDS?
Next to the good things in the EHDS framework, a missed opportunity is the lack of an institutionalized commitment to equity and the collective good. The EHDS focuses primarily on facilitating data access for secondary use, also by private actors. Still, it says very little about how commercial benefits will be shared with people and communities. There is also insufficient attention to power asymmetries between patients and institutions, citizens and corporations, which can be exacerbated by current data sharing regimes. By not including data solidarity, the EHDS misses the chance to ensure that data use aligns with public values and builds trust in the long term.
The EHDS emphasizes data sharing and individual consent, but your white paper argues that individual control alone is insufficient. Could you elaborate on how a solidarity-based approach would reshape these mechanisms?
Individual consent is an important safeguard, but it does not address the structural problems, such as the asymmetries in economic and political power between data subjects on the one hand and companies or public bodies using data on the other. Data solidarity tries to complement individual-level control over data by embedding stronger collective oversight into data systems. For example, rather than placing the full responsibility on individuals to opt in or out, a solidarity-based system would require all data users – public or private – to demonstrate how their activities serve public value and avoid harm. Governance structures would include citizen representatives and stakeholder bodies that evaluate and monitor data use according to shared ethical standards. In this way, solidarity strengthens trust and accountability beyond the limits of individual choice.
One of the core ideas you represent is that data use, not data type, determines potential harm or benefit. Why is this distinction especially relevant for health data governance in the EU?
Most current data governance regimes – such as the GDPR – rely on distinctions between different categories of data, such as personal and non-personal data, or sensitive and non-sensitive data. But in reality, it is not only the type of data that determines how risky or beneficial it is – it’s how the data is used. Even seemingly innocuous data, such as restaurant bookings or mobility patterns, can be used to profile people, or even to identify them, if connected with other data. Data solidarity shifts attention from what kind of data is being processed to the context, purpose, and power dynamics surrounding its use. This lens is crucial for the EU if it wants to future-proof its health data governance and ensure that regulation is responsive to evolving technologies and practices.
Your framework proposes three pillars: facilitating public value, preventing and mitigating harm, and equitable benefit-sharing. How would you imagine these pillars functioning practically within a regulatory system like EHDS?
These three pillars provide the ethical infrastructure for responsible and fair data governance. Facilitating public value would mean that uses of health data that are likely to benefit people and society, such as improving healthcare delivery, enhancing research, or strengthening health equity, and not merely commercial efficiency, should be made easier. This could be done by removing red tape or by providing public funding.
Preventing and mitigating harm means that those data uses that we know to be harmful should be prohibited, and not just be made more ‘ethical’ because they help businesses make profits. Moreover, whenever people are harmed by data use, they need effective support, also in cases where they have no access to legal remedies (e.g., because no law was broken). The third pillar, equitable benefit-sharing, requires mechanisms through which the economic and social gains from data use are fairly redistributed, and do not only boost the profits of big tech.
The paper suggests that commercial profits derived from data use should be shared with the public. How could this idea be operationalized in real-world European data governance?
One way to do this is through a public value return mechanism. This could take the form of licensing fees or data access levies for companies that profit from large-scale health data analysis. These funds could be pooled into national or EU-level solidarity funds to support public health initiatives, improve healthcare infrastructure, or invest in digital literacy. Another model involves public-private partnerships where companies must co-develop tools or treatments with public institutions, ensuring that benefits, such as reduced drug costs or open-access tools, return to society. Transparency and participatory governance would be essential to ensure that benefit-sharing is meaningful and not symbolic.
You stress that current digital governance still reinforces power asymmetries between individuals and large corporations. How could data solidarity help counterbalance the growing influence of tech giants in the health sector?
Tech giants and other powerful actors control not only infrastructure and platforms but also the terms under which data is accessed, used, and monetized. Data solidarity challenges this by calling for stronger collective rights and democratic oversight. For instance, public bodies could be empowered to audit algorithms, demand accountability for opaque practices, or restrict certain uses of health data that do not serve public value. Moreover, solidarity-based governance encourages the development of alternative infrastructures – such as data commons or cooperatives – that prioritize transparency, reciprocity, and civic control. In this way, it helps rebalance digital power structures and strengthens the agency of communities and institutions over their own data and lives.
Where do you see the future of data sharing? Do you believe solidarity-based frameworks could realistically become mainstream in Europe’s digital health ecosystem, or will individualist and market-driven models remain dominant?
It is a mixed picture. On the one hand, I see growing recognition – among scholars, practitioners, and policymakers – that data governance must be more inclusive, accountable, and socially oriented. If framed pragmatically and tied to concrete institutional reforms, solidarity-based frameworks can become central to Europe’s digital health governance. On the other hand, market-driven models remain powerful, and the narrative of innovation often privileges speed over democratic deliberation. Moreover, the current convergence of political and economic power – as well as visions by tech oligarchs to replace government and administration with computers that they can control – are deeply concerning.
If you were advising European policymakers today, what concrete policy recommendation would you prioritize to embed data solidarity into the next revision of the EHDS?
To start with, I would recommend embedding a systematic and democratic public value assessment for all secondary uses of health data. The PLUTO tool, which our research group developed and made freely available online, is designed to be used by institutions and any citizen or social group wishing to evaluate the societal relevance of data use. It offers a structured template for assessing public value across key dimensions such as trust, legitimacy, and outcomes. Rather than relying solely on legal or technical checks, PLUTO helps align data governance with broader societal priorities. Uses of data that demonstrably serve the public interest could then be prioritized over those that carry disproportionate risks or are likely to benefit only narrow commercial interests.
