Realising the potential of non-traditional data for research in Europe | Advancing access and re-use for improving health and wellbeing

Back to News Realising the potential of non-traditional data for research in Europe | Advancing access and re-use for improving health and wellbeing

INTRODUCTION: GIVING EUROPE’S DATA SPACES A PUBLIC PURPOSE

In recent years, Europe has invested heavily in advancing open science and building data spaces. The European Open Science Cloud (EOSC) and the European Health Data Space (EHDS) represent two of the most ambitious public data infrastructure projects within Europe. As impressive as these initiatives are, however, they remain largely focused on technical interoperability and legal compliance for traditional, sectorially specific forms of data. Like many similar data initiatives around the world, they tend to under-emphasise the potential of emerging forms of non-traditional data, for instance those generated through digital platforms, sensors, mobility systems, consumption patterns, and environmental monitoring. This policy brief focuses on the potential of such data with regard to the domain of health and well-being. Our research in this sector demonstrates how non-traditional data sources already generate measurable value for understanding population risks, behavioural and environmental determinants, and structural inequalities. This research built upon evidence from more than 290 studies to illustrate that non-traditional data can support earlier detection of health threats, reveal nutrition and access disparities, and link environmental exposure to disease patterns. While this brief focuses on health and well-being, its usefulness and findings extend beyond a single sector: similar approaches can be used for a variety of domains, including agriculture, climate change, inequality, and more. In what follows, we first present a brief overview of non-traditional data, discussing their sources, potential, and some associated risks (Section I). We then present empirical evidence showing how non-traditional data can be linked to specific health outcomes and risks (Section II), followed by a discussion of risks (III). Section IV examines the European strategic opportunity and presents some specific policy outcomes. The overarching message of this brief is that the key policy challenge for European decision-makers is no longer whether non-traditional data can contribute to research and policy, but how Europe can move from fragmented pilots to a coordinated, legitimate, and sustainable system of data reuse. More specifically, this brief argues that EOSC, EHDS, and Horizon Europe should be aligned as mutually reinforcing levers to unlock nontraditional data for research and transform data spaces into decision intelligence for health and well-being. Further, policymakers and researchers should also explore how vetted researcher access under DSA Article 40 can enable responsible reuse of platformgenerated data for other public-interest research.

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Author

Stefaan Verhulst

Course Lead · Data Stewards Founder

Dr. Stefaan Verhulst is Co-Founder of the DataTank and The GovLab and the main lecturer of the data stewardship academy. In addition, he is a Research Professor at the Center for Urban Science and Progress at the Tandon School of Engineering of New York University; and a Senior Advisor to the Markle Foundation where he spent more than a decade as Chief of Research. He is also the Editor-in-Chief of the open-access journal Data & Policy (Cambridge University Press); the Research Director of the MacArthur Research Network on Opening Governance; Chair of the Data for Children Collaborative with Unicef; a member of the High-Level Expert Group to the European Commission on Business-to-Government Data Sharing; and of the Expert Group to Eurostat on using Private Sector data for Official Statistics. In addition he is also a member of the UNESCO Information Ethics Working Group; Researcher at the ISI Foundation (Torino, Italy); Senior Researcher at SMIT (Studies in Media, Innovation and Technology) at the Free University of Brussels (VUB) . In 2018 he was recognized as one of the 10 Most Influential Academics in Digital Government globally (by the global policy platform Apolitical). Previously at Oxford University, he was the UNESCO Chairholder in Communications Law and Policy and co-founded and was the Head of the Program in Comparative Media Law and Policy at the Center for Socio-Legal Studies. He was the Socio-Legal Fellow at Wolfson College, and is still an emeritus fellow at Oxford. He also taught for several years at the London School of Economics and was Co-Founder and Co-Director of the International Media and Info-Comms Policy and Law Studies (IMPS) at the University of Glasgow School of Law. He has published widely - including seven books- and his writings and work have appeared in the Harvard Business Review, Stanford Social Innovation Review, Project Syndicate, Wall Street Journal, and The Conversation (among many other outlets). He is asked regularly to present at international conferences including, for instance, TED, Collision, and the UN World Data Forum. Numerous organizations have sought his counsel on a variety of topics including data and AI governance - including the WorldBank; IDB, CAP, USAID, DFID, IDRC, AFP, the European Commission, Council of Europe, the World Economic Forum, UNICEF, OECD, UN-OCHA, UNDP, UNESCO and several other international and national private and public organizations. He is also a Linkedin Learning instructor seeking to democratize the practice of data stewardship globally.

innovationnon-traditional dataresearch and developmentdata stewardship