Strengthening health data governance in the digital age
The digitalisation of health systems and the rapid development of digital tools and Artificial Intelligence (AI) has increased the amount of health data that is collected and used. Health data needs to be effectively and equitably governed – including through robust national legislation and regulation – to ensure the right protections are in place to safeguard data privacy and rights, and mitigate risks of data misuse; while also supporting responsible data use for public benefit. A global and regional health data governance framework can help build political commitment and consensus across countries around needed legislative and regulatory provisions (which would in turn support countries in strengthening national frameworks), while also facilitating responsible cross-border data sharing.
Transform Health is leading efforts to strengthen health data governance at national, regional and global levels through advocacy, technical support, developing tools and resources, mobilising communities and building collaboration.
What we're calling for
Robust national legislation to:
Safeguard data privacy and rights, and mitigate risks of data misuse.
Support responsible data use for public benefit.
Strengthen equity and rights-based health data governance.
A global and regional framework to:
Build consensus across countries around essential legislative and regulatory considerations.
Establish a level of compatibility in national approaches to foster greater legal coherence across jurisdictions to support cross-border data sharing.
Provide a blueprint that governments can use to strengthen national approaches.
Establish cross-border data sharing protocols.
What we're doing
Health Data Governance Principles
Transform Health led the development of the Health Data Governance Principles, which bring a human rights and equity lens to the governance of health data, while supporting sustainable and resilient public health systems that can deliver UHC. The Principles were developed through an inclusive and consultative process, bringing together more than 200 contributors from 130 organisations. They have been endorsed by more than 170 organisations and governments.
A Model Law (legislative blueprint) on Health Data Governance
The foundation for robust national legislation and a global and regional framework
Transform Health led the development of a Model Law on Health Data Governance, which provides a tool for governments, and the foundation for a global and regional framework. As a blueprint and flexible framework, it offers a legislative guide and resource that can be used by countries (fully or in part) to support in strengthening national legislative frameworks on health data governance. The Model Law is designed to be non-prescriptive and allows for flexibility and adaptability to local contexts and needs.
Transform Health has also developed an implementation guide that supplements the Model Law. It is intended to assist stakeholders to understand the purpose of the Model Law and how it can be used as a resource and flexible legislative guide to support governments and other stakeholders in strengthening national health data governance legislative and regulatory frameworks.
Download the draft Model Law on Health Data Governance
EXPLORE THE MODEL LAW AND IMPLEMENTATION GUIDEAssessing National Frameworks
Supporting Governments to Strengthen National Frameworks
Transform Health is working with governments and national stakeholders to strengthen national health data governance legislative and regulatory frameworks. This process is supported through our tested technical support approach and tools.
Engage stakeholders
National demand & buy-in
Review laws & regulations
Tools: Legislative Assessment Tool; Health data governance Principles
Assess gaps & map needs
Tool: Model law (Blueprint) and implementation guide
Convene national workshop
Ensure government & stakeholder participation
Develop national roadmap
Secure wide stakeholder buy-in
Implement roadmap
Owned and led by government
Raising Awareness and Mobilising Communities
Through the #MyDataOurHealth campaign, Transform Health is raising public and political awareness about the importance of personal health data, its potential public benefit, and the need for government action to ensure good governance nationally, regionally and globally. Through the campaign we are mobilising communities to call for action on this issue.
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Collaborating with National, Regional and Global Stakeholders
Transform Health is convening stakeholder discussions and collaboration to build support for and advance progress towards more robust health data governance frameworks at national, regional and global levels.
Convening discussions to build consensus and action during key events (World Health Assembly, UNGA, Africa HealthTech Summit, Global Digital Health Forum, AU Summit).
Collaborating with partners, including: WHO, Health Data Collaborative, Africa CDC, AUDA-NEPAD, OECD, AeHIN, HELINA, Vital Wave, among others.
Co-chairing the Africa CDC Flagship Initiative on Health Data Governance to support health data governance in the region.
