Imagine a person being treated at a hospital in one EU country while their critical medical information – lab results, prescriptions, diagnoses – remains locked away in databases in another member state. Now imagine a researcher working on improving cancer treatment who cannot access the data needed to train a predictive model because of incompatible systems, legal uncertainty or lack of clarity around who is entitled to do what. These are not far-fetched scenarios – they are the reality of fragmented data governance in European healthcare.
The European Health Data Space (EHDS) is a bold and ambitious attempt to change this. It came into effect on 26 March 2025, with a staggered implementation approach. Full operationalization is expected by March 2031, after phased rollouts for interoperability standards (2027–2029) and secondary data use (2029–2031). The EHDS aims to create a common framework for health data access and exchange across the EU. The idea is that citizens, healthcare providers, researchers and policymakers will be able to use health data more easily, safely, and fairly – whether for individual care or for broader societal benefit.
There is much to support in this vision. Who would object to a system that helps doctors provide better care, researchers make new discoveries and policymakers respond to public health needs more effectively? And yet, the road to a more connected, data-driven healthcare future is not simply a technical or legal challenge. It is, at its core, a political and ethical one.
The risks of replicating inequities
While the EHDS is a significant step forward in some respects, in a Correspondence published in Nature Medicine, Jon Rueda et al caution that without deliberate attention to equity, initiatives such as the EHDS risk replicating the very inequalities they aim to overcome. For example, while commercial entities may benefit from access to large, high-quality datasets, marginalized communities – and those in low- and middle-income countries (LMICs) – may remain underrepresented in the data or face disproportionate risks from misuse.
The answer to this problem, the authors argue, is data cosmopolitanism, a framework that emphasizes global data justice and data solidarity, and it highlights the risks of inequities in digital health governance if these principles are not adopted.
Data cosmopolitanism: a global perspective on data solidarity
Data cosmopolitanism underscores the importance of data solidarity in our times. The concept of data solidarity – developed by a team at the University of Vienna and DTH-Lab in Geneva and other collaborators around the world – seeks to do three main things. First, it promotes policies that make it easier to use data for purposes that are likely to benefit people, without, at the same time, posing significant risks. Second, data solidarity advocates for the prohibition of data uses that are known to cause harm to people, groups or society at large. Third, where and when the use of data does not benefit many people and societies but only creates commercial profits, make sure that some of these profits come back to the people whom the data come from.
Data cosmopolitanism, as promoted by Rueda and colleagues, highlights how the idea of data solidarity can work on a global scale. While data solidarity emphasises collective control and equitable benefit-sharing within specific communities or regions, data cosmopolitanism extends these commitments to the whole world. Advocating for cross-border cooperation and ensuring the benefits and burdens of health data governance are distributed fairly across nations, particularly addressing the needs of marginalized and underrepresented populations.
The EHDS is still in formation. The way we build it – technically, legally and ethically – will shape the future of health systems across Europe. We can choose to treat health data as a collective resource, governed by principles of fairness, reciprocity and inclusion. Or we can allow it to become a tool of concentration and exclusion, where those with the most technical or financial power gain the most.
Data solidarity and, by extension, data cosmopolitanism offer us a compass for this choice. If the EHDS is to succeed, it must be built on foundations that empower the global community as a whole, not just businesses or powerful nations.
Barbara Prainsack is a professor of political science at the University of Vienna and an expert on health, data and democracy.
Aferdita Bytyqi is the Executive Director of the DTH-Lab ensuring the success of overall project goals and strategic objectives of the DTH-Lab both internally and with key external stakeholders within the global health ecosystem.
© 2025 DTH-Lab. All Rights Reserved.
Barbara Prainsack is a Professor and Director of the Centre for the Study of Contemporary Solidarity (CeSCoS) at the University of Vienna. He work explores the social, regulatory, and ethical dimensions of biomedicine, data solidarity, and healthcare innovation. Barbara collaborates internationally with distinguished institutions dedicated to advancing solidarity-based solutions and ethical policymaking in science and technology. With extensive experience spanning academia and policy advice, she brings expertise in research leadership, interdisciplinary collaboration, and advocacy. Barbara holds honorary and advisory roles at prestigious institutions worldwide, including the University of Sydney, the University of Oxford, and numerous national academies.
Aferdita Bytyqi is the Executive Director of the DTH-Lab ensuring the success of overall project goals and strategic objectives of the DTH-Lab both internally and with key external stakeholders within the global health ecosystem. With a career spanning over 25 years, she brings a wealth of progressive programmatic experience in spearheading international research, development, and regeneration initiatives on behalf of multilateral and bilateral agencies, as well as private donors. Her previous professional contributions include ICS Integrare, MBM, FAO, WHO and the Senior Coordinator of the Lancet and Financial Times Commission. Aferdita has a Dipl. Ing in Architecture and an M.Sc. in Urban Design in Development from UCL.
