Transform Health

Concrete, coordinated action to establish a global framework for data governance and AI grounded in existing principles and designed to support countries to strengthen their own national frameworks and systems, including specifically for health. The Global Dialogue should set out a clear pathway towards its development including clear actions for adoption, implementation and accountability, including - in the case of health - through a World Health Assembly resolution.

• Safe, secure and trustworthy AI
• Protection and promotion of human rights
• Transparency, accountability, and human oversight

Health data governance is a key pillar of responsible AI in health and AI systems are only as trustworthy, equitable, and effective as the data that underpins them. We need robust, rights based, equity driven legislative frameworks to ensure the responsible collection and use of data - as well for the digital tools and AI that generate and use that data to ensure safe, fair, or beneficial AI outcomes. And we need to ensure inclusive health data governance by designing rules, systems, and decision-making processes that are fair, representative, transparent, and beneficial for all populations - especially those who are often underrepresented or at risk of harm. This must be intentionally embedded into how data and AI is governed.

Data governance

A central gap is the lack of consistent, robust legal and regulatory frameworks across countries. Many health systems still operate with fragmented or underdeveloped policies, limiting their ability to safely manage, share, and use data. This fragmentation reduces interoperability and hinders cross-border data exchange, which is increasingly essential for research, surveillance, and coordinated responses to global health challenges. Moreover, rapid advances in digital health technologies, especially AI, are outpacing governance and legislation. Without adequate safeguards, this creates risks of data misuse, privacy violations, and algorithmic bias, potentially exacerbating existing health inequities and undermining trust in health systems. Trust is also a critical factor, with weak governance risking discouraging individuals from sharing their data, which in turn limits the effectiveness of data-driven healthcare innovations and public health planning. This means that the full value of health data is not being realised. These governance gaps are currently a major bottleneck in digital health transformation and AI. While emerging frameworks and policy alignment efforts are beginning to address these challenges, with the potential to unlock safer, more equitable, and more effective use of health data across the sector, there is a need for a concerted global effort and the development, endorsement of a global health data governance framework, with clear reporting and accountability around its implementation.

Regional and global cooperation will be important in supporting this by establishing shared frameworks and standards that support robust and compatible national approaches, provide a blueprint that governments can use to strengthen national approaches, and foster responsible cross-border data sharing. This is where the Global Dialogue on AI Governance can add value. Transform Health therefore encourages the Global Dialogue to foster concrete, coordinated action to establish a global framework for data governance and AI - including specifically for health. Our widely-used health data governance legislative blueprint is a contribution to this. This would address an urgent gap in the current AI governance landscape. In terms of outputs, we recommend that the first Dialogue deliver a clear pathway towards a data governance and AI framework - grounded in existing principles and designed to support countries to strengthen their own national frameworks and systems. This should include clear actions for adoption, implementation and accountability, including - in the case of health - through a World Health Assembly resolution. This pathway needs to recognise the challenges faced by different countries at different stages of digital and legal maturity and technical capacity. We also call for Inclusive governance - including the meaningful engagement of civil society, communities and young people to be prioritised. This includes embedding such participation in the Global Dialogue process and its governance. Transparency, participation and accountability are essential to building trust. If we want AI to deliver for health, we must strengthen the systems that govern health data. Getting data governance right is what will make responsible, equitable AI possible.

Transform Health's Health Data Governance Principles - developed through an inclusive, consultative process and endorsed by over 170 organisations and governments - which offer a foundation for equity and rights based health data governance (including national legislation and global and regional frameworks): https://healthdatagovernance.org/principles/ Health data governance legislative blueprint - a non-prescriptive legislative guide and resource that can be used by countries (fully or in part) to support efforts to strengthen national laws and frameworks on health data governance, while also informing global and regional frameworks: https://healthdatagovernance.org/model-law/ Africa CDC work to develop a Continental Health Data Governance Framework (also supported by Transform Health)

The Dialogue should prioritise the meaningful engagement of civil society, communities and young people. This includes embedding such participation in the Global Dialogue process and its governance and across dialogue discussions. Transparency, participation and accountability are essential to building trust.

Young people, marginalised communities, women.

Civil society and youth-led discussions with decision makers. Commitment platforms so discussions lead to concrete actions and outcomes.

https://healthdatagovernance.org/