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.
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 fostering collaboration and action.
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.
Provide a blueprint that governments can use to strengthen national approaches.
Establish a level of compatibility in national approaches to foster greater legal coherence across jurisdictions to support cross-border data sharing.
Establish cross-border data sharing protocols.
What we're doing
Developing tools and resources
The Health Data Governance Principles 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.
governance and Implementation Guide
The Legislative Blueprint (Model Law) on Health Data Governance 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. It is designed to be non-prescriptive and allows for flexibility and adaptability to local contexts and needs.
Supporting governments to assess and strengthen national frameworks
Transform Health is working with governments and national stakeholders to review and strengthen national health data governance legislative and regulatory frameworks. This process is supported through our tested technical support approach and tools.
Engage stakeholders
Review laws & regulations
Assess gaps & map needs
Convene national workshop
Develop national roadmap
Implement roadmap
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 and galvanising action 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.
