ArticleFrontiers in digital health2025
Secondary use under the European Health Data Space: setting the scene and towards a research agenda on privacy-enhancing technologies.
Article in Frontiers in digital health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Blockchain-Based Dynamic and Revocable Consent for Secondary Health Data Use: Systematic Review.JMIR medical informatics · 2026Pooled it
- Health Data Quality Skill Gaps and Training Needs Among European Health Data Stakeholders: Cross-Sectional Survey.Journal of medical Internet research · 2026Article
- High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology-Implications for Real-World Data Platform Governance: Cross-Sectional Study.Journal of medical Internet research · 2026Article
- What patients value in data reuse for oncology research: a multi-stakeholder qualitative study to inform the European Health Data Space implementation in Belgium and beyond.Archives of public health = Archives belges de sante publique · 2026Article
- The next frontier in sepsis: connected ICU data for real-world clinical decision making.Intensive care medicine · 2026Review
- AI health literacy as a foundation for responsible AI in healthcare: a framework for trustworthy implementation.Frontiers in digital health · 2026Review
- The European Health Data Space and biobanking in Europe: synergies, tensions and the future governance of data-driven health research.Frontiers in genetics · 2026Review
- Advancing real-world data integration in nursing research: A policy perspective on Japan's next-generation medical infrastructure law and the EU EHDS framework.Japan journal of nursing science : JJNS · 2026Article
- Trust and trade: patient perspectives on the ethics of real-world data monetisation.Frontiers in health services · 2026Article
- Scalable Big Data Platform With End-to-End Traceability for Health Data Monitoring in Older Adults: Development and Performance Evaluation.JMIR medical informatics · 2025Article
- Assessing Data Quality in Heterogeneous Health Care Integration: Simulation Study of the AIDAVA Framework.JMIR medical informatics · 2025Article
- Integrating Precision Medicine and Digital Health in Personalized Weight Management: The Central Role of Nutrition.Nutrients · 2025Review
- Evaluation of the epidemiological and economic impact of the ADLIFE intervention on medium- to long-term in patients with advanced chronic disease.Frontiers in public health · 2025Article
- Lessons from federated networks for implementing the European health data space. Empirical study.Digital healthArticle
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The Regulation for European Health Data Space (EHDS) aims to address the fragmented health data landscape across Europe by promoting ethical and responsible reuse of data, seeking to balance the opportunities for data reuse with the risks it entails. However, the techno-legal aspects of navigating this balance remain poorly understood. This study adopts a qualitative and inductive approach, using semi-structured interviews to explore the risks, challenges, and gaps in the implementation of privacy-enhancing technologies (PETs) within EHDS, particularly in the context of its governance structure and data permits for secondary data use. The findings identify five distinct categories of concerns, based on fourteen risks, and highlight seven governance and technological solutions, illustrating how these solutions address multiple, often correlated risks. The interdependence between concerns and solutions emphasises the need for a strategic and integrated approach to both governance and technology. This mapping between the risks and solutions also highlights the central role of certain solutions, such as public engagement and awareness, in addressing multiple risks. Furthermore, it introduces a new dimension to the concerns by focusing on the structural imbalances in access to the health data economy. We conclude by proposing a research agenda to advance the integration of PETs into the EHDS framework, ensuring that data permits can effectively facilitate secure, ethical, and innovative health data use.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.