A critical moment for global action on health data governance
Health data governance is on the agenda of the 158th WHO Executive Board meeting, taking place in Geneva from 2-7 February – to be put forward for discussion during the World Health Assembly in May. It will be discussed under Agenda item 15 on the “Harmonization of regulatory approaches, governance and standards for data, digital health and artificial intelligence in the health sector”. This is an important opportunity to advance global cooperation and action for responsible, equitable, and rights-based health data governance for the digital and AI era. To ensure this happens, discussions must result in concrete commitments and actions, with strong reporting and accountability.
Transform Health welcomes this important – and long overdue – advancement! As a coalition of 200+ organisations, we have been advocating for the last five years for a global framework and resolution on health data governance through the World Health Assembly. We have been building support for more robust health data governance frameworks at national, regional and global levels, including developing tools and resources, such as the health data governance principles and Model Law/Blueprint, and providing technical support to foster progress. At the sidelines of the last four World Health Assemblies we have co-hosted side events with governments to build support and cooperation on health data governance and a global resolution.
The health sector is undergoing rapid transformation driven by artificial intelligence and digital technologies. Data underpins these systems and must be governed responsibly and equitably through strong legislative frameworks that improve health outcomes while protecting rights and upholding data sovereignty. Effective governance is essential to ensure transparency, accountability, and public trust in digital and AI-enabled health systems. Government action is crucial to strengthen national legal and regulatory frameworks governing health data. At the same time, international cooperation is essential to promote coherence through a global standard, encourage learning, and foster responsible data sharing.
Current progress in not enough
Current progress on this agenda does not go far enough in addressing the current challenges around data management, use and protection. Global cooperation and harmonisation towards a global standard or commitment on health data governance has not advanced. This is why discussions during this year’s WHO Executive Board meeting and World Health Assembly are so critical, as they provide the opportunity to finally advance this agenda at the global level and lead to concrete commitments and action through a World Health Assembly resolution on health data governance. WHO should recognise the global health data governance principles (that have been endorsed by more than 170 organisations and governments) and support Member States’ calls for a global resolution on health data governance.
Transform Health’s Call to Action
At the WHO Executive Board meeting in February and the World Health Assembly in May, we urge Member States and WHO to:
A) Continue to support the development of a World Health Assembly resolution on health data governance, ensuring it includes commitments on a global standard/framework that harmonises essential legislative and regulatory provisions and sets out protocols for responsible cross-border data sharing. The World Health Assembly resolution should:
- Establish a shared global standard for health data governance, setting out essential legislative and regulatory provisions, drawing on national and regional experience, best practice, and existing resources
- Promote robust and compatible national approaches to build trust and legal coherence across jurisdictions
- Provide a practical blueprint to guide and strengthen national governance frameworks
- Set clear protocols for responsible cross-border data sharing that maximises public benefit and trust between Member States
- Improve coordination and coherence in the collection, management, and use of health data
B) Commit to strengthening national health data legislation and regulation to:
- Protect privacy and human rights and mitigate risks of misuse
- Enable responsible use of data for public benefit
- Uphold data sovereignty
C) Ensure national and global health data governance frameworks are grounded in:
- Equity and rights-based principles
- Inclusive processes – with the meaningful engagement of civil society – to support their development, implementation, and monitoring,
D) Establish concrete reporting and accountability mechanisms to track progress on these commitments, including through:
- The next global digital health strategy (2028–2033)
- Regular reporting through the World Health Assembly
To further discuss this important issue and advance multilateral cooperation and concrete actions, we encourage Member States to co-host an official Member State side event on health data governance during the World Health Assembly in May. Transform Health stands ready to support with any preparations in this regard.
Together, these measures would affirm data governance as a core pillar of resilient and equitable health systems, and the foundation of responsible digital transformation and AI for health. This would strengthen public trust by ensuring individuals are protected and respected, while enabling the responsible use of health data for the public benefit.