Every day, healthcare systems and research institutions generate vast volumes of health data – from electronic medical records and imaging studies to genomic sequencing and population-level statistics. These data hold enormous promise: they can fuel medical research, accelerate innovation, and ultimately improve both public health outcomes and healthcare efficiency.
Yet despite this potential, health data remain vastly underutilised. OECD highlights persistent barriers that prevent countries from harnessing their full value. For Europe, this is not only a healthcare issue. It is also a question of long-term economic resilience and competitiveness.
Balancing opportunity with protection
The central dilemma is clear: how can health data be used responsibly for the public good while safeguarding privacy and individual rights? Many countries have introduced legal frameworks that allow reuse of health data for research and innovation without explicit patient consent, provided robust safeguards are in place. These include secure environments for data processing, anonymisation techniques, strict access controls, and independent oversight.
This shift reflects a growing recognition that traditional consent mechanisms do not always work in a digitalised health system. Informed consent is essential in clinical trials, but impractical when reusing millions of routine health records. Clear legal bases for “public interest” use (combined with strong safeguards) are emerging as a pragmatic path forward.
The obstacles ahead
Despite legislative progress, three major challenges remain:
- Fragmentation of governance frameworks: Definitions of “public interest” vary widely across countries, complicating cross-border research and collaboration.
- Bureaucratic hurdles: Access approvals are often slow and complex, sometimes involving multiple authorities and delays of more than a year. This discourages research and slows innovation.
- Lack of public trust: While most citizens see the potential of data use in improving healthcare, concerns about privacy and security remain high. Trust levels vary sharply across countries, undermining consistency in public support.
What policymakers can do
None of these challenges are insurmountable. OECD recommendations outline a clear roadmap:
- Work towards common standards and definitions, ensuring compatibility across national frameworks without requiring identical legislation.
- Adopt risk-based approaches that prioritise high-benefit, low-risk applications, supported by privacy-enhancing technologies and streamlined approval processes.
- Build public trust through engagement, from citizen assemblies to awareness campaigns, ensuring that people understand how their data are used and how their rights are protected.
Why this matters
Unlocking the potential of health data is not only about better healthcare – it is more about strengthening innovation ecosystems, reducing inefficiencies, and building more resilient economies and societies. If managed wisely, health data can become a strategic advantage: driving medical breakthroughs, attracting investment, and helping health systems adapt to demographic and technological change.
The message is clear: health data must move from being an untapped resource to a driver of innovation, better care, and sustainable growth.
Written by Michael Fanta