Africa Leading the Way - Regional Action On Health Data Governance

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Digital technology has hugely improved healthcare in many ways.
10 February 2025
Africa Centres for Disease Control and Prevention (Addis Ababa)
press release

Africa is leading the way. Strong national and regional leadership has ensured health data governance is on political agendas, with notable advances over the past year. The African Union Summit, taking place on 15-16 February 2025, presents an important inflection point to build on progress and stimulate further action in 2025 and beyond, including towards a regionally-led framework and commitment on health data governance.

More robust health data governance for the digital age

The rapid development of digital tools and artificial intelligence (AI) and utilisation of health data, are transforming healthcare delivery and patient outcomes, and helping to close equity gaps and accelerate progress towards UHC goals. This digitalisation is also generating greater volumes of data - creating immense opportunity, but also potential risks. A robust legislative and regulatory environment is critical to uphold privacy and rights and mitigate data misuse - while also supporting the beneficial use of health data to advance health outcomes.

The need to strengthen health data governance is increasingly recognised by governments and across global and regional frameworks, strategies and commitments. In Africa, the AU Data Policy Framework (2022) recognises health data as a unique category of data that demands more rigorous protections and robust governance instruments and recommends the development of sector-specific data governance. The AU Digital transformation strategy emphasises the need for AU Member States to have adequate regulation around data governance and recommends the adoption of a legal and regulatory framework for personal data protection/privacy. The Africa CDC digital transformation strategy prioritises support for the development of legal and regulatory frameworks for digital health, including on cross-border data sharing.

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Regional efforts towards more robust health data governance

This has given rise to the Africa CDC Flagship Initiative on Health Data Governance - one of the actionable initiatives to take forward Africa CDC's Digital Transformation strategy, while also responding to other regional (and global) frameworks and strategies. Launched during the 2023 Africa HealthTech Summit, it aims to work with governments in the region to strengthen health data governance approaches, including through a regional framework, which would support governments in strengthening national legislation.

Transform Health and HELINA have been working with Africa CDC, national and regional partners, and the Flagship Initiative working group to support these efforts, including through support from the Patrick J. McGovern Foundation, to develop technical tools for stronger health data governance. Notable achievements of the Flagship Initiative and regional efforts over the past year include:

  • Model Law on Health Data Governance (a health data governance framework) - providing a tool and blueprint to support national efforts to strengthen legislation, as well as the foundation for a global and regional framework). The modal law/framework was informed by equity and rights-based Health Data Governance principles (endorsed by more than 170 organisations and governments) and national, regional and international frameworks and best practices. It was shaped and validated through an extensive consultation process engaging nearly 1000 stakeholders from across the globe, including eight national and regional consultations across Africa.

[Consultative process to develop the Model Law on Health Data Governance]

  • Technical Implementation Guide providing technical guidance to support the use of the model law as a tool to strengthen national frameworks.
  • National health data governance legislative and regulatory landscape reports for 24 countries, including nine countries in the African region (Cameroon, Egypt, Kenya, Malawi, Mozambique, Rwanda, Senegal, South Africa, Zambia), to deepen understanding of how countries are addressing health data governance and to take stock of current legislation and regulation.
  • Health data governance legislative and regulatory assessment tool to support countries in assessing their national health data governance landscape, including identifying areas to be strengthened.
  • Working with national governments and stakeholders in Cameroon, Malawi, Rwanda, Senegal, South Africa, Uganda and Zambia to support efforts to strengthen health data governance legislative and regulatory frameworks, using the Model Law as a tool.
  • Convening discussions to build consensus and action, and showcase regional leadership, including during the World Health Assembly, UN General Assembly, Africa HealthTech Summit, and Global Digital Health Forum.

[Panel on Health Data Governance during the 2024 Africa HealthTech Summit]

Looking towards the AU Summit

The AU Summit in February offers an important opportunity to consolidate this progress and move towards a regional (and global) framework and commitment. We encourage bold leadership and action to ensure this happens.

During the Summit, Africa CDC, Transform Health, HELINA, and other regional partners are convening stakeholders around a discussion on health data governance, co-hosted by the Ministries of Health of Ethiopia, Rwanda, Zambia, Cameroon, Senegal and Uganda. The session will build and showcase political leadership on health data governance in Africa, while galvanising action to drive this agenda both regionally and globally. The session aims to connect governments and regional stakeholders to build a network of champions in the region, forging the path towards a regional framework.

Countries across Africa have diverse contexts and needs, leading to varying approaches to health data governance. A regional framework, endorsed by AU member states, would support these efforts by: 1) fostering the exchange of experiences and good practices across the continent; 2) establishing a common understanding of essential legislative provisions; and 3) promoting legal coherence across jurisdictions, enhancing trust and enabling cross-border data sharing. A harmonised regional approach can help strengthen national frameworks, ensuring alignment and collaboration while safeguarding individual rights and building public trust.

Co-authors: Mathilde Forslund (Executive Director, Transform Health); Steven Wanyee (President, Health Informatics in Africa); Jean Philbert Nsengimana (Chief Digital Advisor, Africa CDC)

 

Read the original article on Africa CDC.

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