Governance of Healthcare Data
May 21, 2025
Day 1 at NeuroInsight Summer School
A full day of learning about data governance, privacy, and ethical use of healthcare data.
Today’s workshop was held at the Royal College of Surgeons in Ireland (RCSI), Mercer Building, focusing on the governance and safe use of healthcare data. It brought together researchers and experts to explore how to handle sensitive medical data responsibly and effectively.
We explored how healthcare data can be used responsibly in research while following legal and ethical standards.
- Overview of major regulations: GDPR, EU AI Act, EU Data Governance Act, and the European Health Data Space (EHDS)
- Introduction to FAIR principles (Findable, Accessible, Interoperable, Reusable) for managing health data
- Key challenges: data standardization, cybersecurity, privacy, and legal concerns
- Methods to ensure data quality: accuracy, completeness, consistency, timeliness, integrity, and relevance
- Strategies for data protection: encryption, secure storage, anonymization, and controlled access
- Responsible use of AI and medical chatbots, with a focus on trust, regulation, and patient safety
- Ethical considerations in publishing and sharing sensitive or identifiable data
The session gave us a strong foundation in navigating health data governance and using data ethically in real-world research.
Big thanks to Clare Harney and Mike Kelliher for their insights. The session was packed with valuable content, practical guidance, and thoughtful discussions.