The increased digitalisation of health systems means that more and more data is produced every day. While this offers an important opportunity to improve health outcomes; it also comes with challenges that need to be mitigated. To fully harness the potential of health data for public benefit and improved health outcomes, while managing risks, protecting individual rights, and ensuring people’s data is protected from misuse, it is important to strengthen the governance of health data through more robust, effective and equitable legislation and regulation.

We are calling for a global health data governance framework (underpinned by equity and rights-based principles) to be endorsed by governments through the World Health Assembly resolution, as well as through regional mechanisms , and for it to be implemented through national legislation and regulation.

More robust health data governance will lead to: Improved data-driven decision-making; advancements in research and innovation; stronger and more equitable health systems; improved health emergency and pandemic response; and ultimately, it will support UHC goals. Importantly, more effective and equitable health data governance will build public trust in health and data systems, which is critical to foster data collection and use for public benefit.

Calling for a global health data governance framework

Since its inception, Transform Health has been advocating and campaigning for a global health data governance framework that allows for the effective, responsible and equitable use of health data for public benefit and improved health outcomes, while safeguarding data privacy, security and rights.


Model Law on Health Data Governance

Transform Health and partners have supported the development of a draft Model Law on Health Data Governance, which articulates core elements, legislative guidance and reference legal text to strengthen national frameworks, recognising the critical importance of strengthening health data governance for improved health outcomes and UHC. The model law  seeks to set a global standard for health data legislation. It aims to build consensus around core areas that should be addressed through national legislation; establish a level of harmonisation across countries, which is important to facilitate cross-border data sharing; and importantly to serve as a resource for governments. This extensively consulted draft Model Law is a starting point for discussion amongst governments. Government leadership is critical to take it forward for endorsement through a World Health Assembly resolution and regional mechanisms, and ultimately to implement it to strengthen national frameworks. ACCESS THE MODEL LAW  

A global governance framework on health data would enable the implementation of globally agreed and standardised regulation to govern the collection and use of health data, ensuring it maximises public benefit within and across borders, whilst safeguarding individual rights. Effective health data governance also requires regional, national and community level guidance and expertise that addresses the cultural and contextual needs of citizens and communities

Governments must be in the driver’s seat, as they play the leading role to endorse a framework through a World Health Assembly resolution and ultimately hold the responsibility for implementing it at the country level through national legislation and regulation. However, it is important that a framework is developed through an inclusive and consultative multi-stakeholder process to leverage and reflect wide perspectives and expertise from across stakeholder groups and experts. Diverse stakeholders should be meaningfully engaged in the process, including governments, academia, multilaterals and technical agencies, regional bodies, civil society and communities, among others.

The Health Data Governance Principles | #HealthDataPrinciples

We encourage organisations and governments to endorse and implement the equity and rights-based health data governance principles and for them to underpin a global framework.

In 2021-2022, Transform Health led the development of the Health Data Governance Principles, which have been widely endorsed by organisations and governments. They bring together contributions from over 200 experts across diverse geographies, sectors and stakeholders.

The Health Data Governance Principles are the first global set of principles, applicable across stakeholder groups, to guide the use of data in health systems. They are oriented towards supporting sustainable and resilient public health systems that can deliver Universal Health Coverage (UHC). With the rights of individuals and communities at their core, the Principles are clustered around three key objectives: protect people, promote health value, and prioritise equity. They create a common vision where all people and communities can share, use and benefit from health data.



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Video Library

Towards a Global Health Data Governance Framework - Transform Health at #WHA76

Tanzanian MP Neema Lungagira calls for a health data governance framework | #HealthDataPrinciples

Stefan Germann on the #HealthDataPrinciples

Joseline Carias on Health Data Governance In Latin America | #HealthDataPrinciples