Strengthening health data governance legislative frameworks: The foundation of trusted digital health and AI
Transform Health
Session 127
The health sector is undergoing rapid transformation driven by artificial intelligence and other digital technologies, which are now integral to health system delivery. 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, regional and global cooperation is essential to promote coherence through shared standards and frameworks. Collaboration would also support cross-country learning and coherence, fostering responsible data sharing within and across borders.
This session will look at health data governance in the digital age, including how AI is changing the game. It will explore the need for urgent action to strengthen national, health-specific legal and regulatory frameworks, as well as the need for regional and global frameworks to support more secure, ethical, and equitable data and AI use and foster responsible cross-border data sharing. It will showcase recent tools and initiatives to advance this agenda (including the health data governance principles and legislative blueprint/model law - https://healthdatagovernance.org), progress on regional frameworks (such as the Africa Continental Framework on Health Data Governance), as well as global discussions through the World Health Assembly.
This session will combine national and regional implementation experience with global policy leadership, offering both practical insight and a pathway for collective action that bridges country needs, regional coordination, and global alignment and standard-setting. It will highlight political realities, lessons learned, and clear opportunities for progress.
This session contributes to the vision of WSIS by exploring how stronger health data governance can enable trusted digital health transformation, support equitable access to the benefits of AI, and strengthen international cooperation on digital policy. As countries work to implement the WSIS Action Lines and advance the Global Digital Compact, health data governance offers a concrete opportunity to translate global digital principles into improved health outcomes, greater trust, and more resilient health systems.
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C6. Enabling environment
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C10. Ethical dimensions of the Information Society
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C11. International and regional cooperation
The session directly contributes to WSIS Action Line C6 (Enabling Environment) by examining the legal, regulatory, and governance frameworks needed to support trusted, secure, and effective use of health data and AI within national health systems. It will highlight the importance of strengthening the enabling environment through robust laws and regulations that foster innovation and improve public benefit, while safeguarding privacy, security, equity, and building public trust.
The discussion also advances Action Line C10 (Ethical Dimensions of the Information Society) by addressing the ethical challenges associated with health data use and AI, including transparency, accountability, fairness, human rights, and data sovereignty. Robust legislative and regulatory frameworks are needed to ensure that digital and AI-enabled health systems, and the health data generated and used by these systems, are developed and deployed in ways that are responsible, equitable, and centred on the needs and rights of individuals and communities.
Finally, the session supports Action Line C11 (International and Regional Cooperation) by exploring the role of regional and global standards, frameworks, and cooperation in strengthening health data governance. Through sharing experiences, emerging initiatives and upcoming opportunities, the session will promote regional and global cooperation and collective action to enable legal coherence and trusted cross-border data sharing.
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Goal 3: Ensure healthy lives and promote well-being for all
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Goal 17: Revitalize the global partnership for sustainable development
The session makes a direct contribution to SDG 3 (Good Health and Well-being) by addressing one of the key enablers of modern health systems: the responsible governance of health data and AI. Strong legal, regulatory, and governance frameworks are essential to harness digital technologies and AI safely and effectively, improving the quality, accessibility, equity, and resilience of health services while protecting individual rights and fostering public trust. By supporting the ethical and secure use of data and AI, the session contributes to better health outcomes and more people-centred health systems.
The session also supports SDG 17 (Partnerships for the Goals) by promoting regional and international cooperation on health data governance, digital health, and AI. Through dialogue on shared standards, governance frameworks, and cross-border collaboration, it will strengthen partnerships among governments, international organizations, regional institutions, and other stakeholders. Such cooperation is essential to build interoperable, trusted, and equitable digital health and health data ecosystems and to ensure that the benefits of data and AI can be realised across countries and regions.
- Objective 4: Advance responsible, equitable and interoperable data governance approaches
- Objective 5: Enhance international governance of artificial intelligence for the benefit of humanity
https://healthdatagovernance.org/
https://transformhealthcoalition.org/
https://www.linkedin.com/company/transform-health-coalition/