Sharing and reuse of health-related data for research purposes: WHO policy and implementation guidance

This WHO document sets out a global policy and practical guidance for sharing and reusing health‑related data from WHO technical programmes for research. It aims to treat data as a global public good, maximising public health benefit while protecting the rights, privacy and dignity of individuals and communities. The policy covers research data generated by WHO, funded by WHO, and secondary use of other health‑related data when WHO is involved, in both emergency and non‑emergency settings, and complements existing WHO policies on Member State data, public health emergencies and clinical trial result disclosure.

The policy section defines key concepts (health‑related data, research data, secondary use, data sharing) and sets four core principles for data sharing: equitable, ethical, efficient and FAIR (findable, accessible, interoperable, reusable). WHO staff and WHO‑supported researchers are expected to develop a data management and data sharing plan for each dataset for which WHO has responsibility. The implementation guidance sets practical expectations, including that:

• anonymised or non‑identifiable datasets are deposited in an appropriate repository with a persistent identifier and open licence, with accurate metadata and documentation
• WHO‑funded research publications include a clear data availability statement with links to underlying or extended data and any required software or materials
• where data cannot be openly shared for ethical, legal or confidentiality reasons, a metadata record and controlled access process are defined
• chosen repositories, whether hosted by WHO or by third parties, demonstrate appropriate governance, legal and ethical compliance, and maintain suitable user and data use agreements.

Annexes provide additional tools, including a data management and data sharing plan template and a visual guide to de‑identification and anonymisation.