This statement is co-authored by Mathilde Forslund, Executive Director, Transform Health; Steven Wanyee, President, HELINA; Neema K. Lugangira, MP, Tanzania; Nicole Spieker, CEO, PharmAccess; Pape A Gaye, Founder-President, Baobab Institute for Health and Development; Nguissali Turpin, Executive Director, ENDA Santé; Yacine Diop Djibo, Founder & Executive Director, Speak Up Africa; Caroline Mbindyo, CEO, Amref Health Innovations; Josephine Nabukenya, Professor, Makerere University
Africa stands at a pivotal moment as they harness the potential of the digital health revolution. With rapid advancements in artificial intelligence (AI) and extensive utilisation of big data, the continent has a unique opportunity to transform healthcare delivery and optimise patient outcomes. However, at the foundation of this transformation there must be robust regulatory systems that safeguard people’s data.
Why health data governance should be prioritised
Health data governance is the cornerstone of responsible data management. It creates an environment where individuals feel secure, respected, and in control of their data while enabling institutions to utilise health data for public benefit. However, without robust regulatory systems, there is a risk of health data exploitation or underutilisation. Strong regulations are essential to protect sensitive information and ensure ethical data practices. Effective governance provides seamless integration and maximises the benefits of AI, telemedicine, and data analytics. Effective and equitable health data governance empowers decision-makers with accurate, timely data to improve health systems and brings us closer to universal health coverage (UHC), Agenda 2063 and the Sustainable Development Goals.
Regional commitments to strengthen health data governance
To harness the potential, and manage the risks, of health data sharing within and across borders, it is important for governments to strengthen national legislation, regulation and policies that govern the collection, ownership and use of health data. This is recognised in the AU Data Policy Framework (2022) which recommends the development of sector-specific data governance, recognising health data as a unique category of data that demands more rigorous protections and robust governance instruments. 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 and privacy. The Africa CDC digital transformation strategy prioritises support for the development of adequate legal and regulatory frameworks for digital health, including on cross-border data sharing.
Forging the way ahead through the Africa CDC Flagship Initiative on Health Data Governance
The Africa CDC Flagship Initiative on Health Data Governance, under Africa CDC’s Digital Transformation Strategy, provides an important opportunity to help take forward the commitments set out in these regional frameworks and strategies. The Initiative aims to support governments in the region to strengthen their health data governance approaches, including through the development and endorsement of an African Common Position on Health Data Governance, to build country consensus and alignment around minimum components for health data governance regulation.
As part of this process, Transform Health, HELINA and other regional partners have already convened two multi-stakeholder consultations with stakeholders to learn from current approaches and hear wide perspectives on what is needed, which has been complemented by a review of the regulatory landscape across several countries. This will inform a draft set of minimum standards. Next month, further consultations will be organised to review and solicit feedback on the draft, while building buy-in and support from governments and stakeholders.
The Flagship initiative represents a powerful collaboration to build consensus, support and legitimacy around an African Common Position and tools and guidance that will support countries to strengthen their national health data governance approaches. This will also help ensure that these are informed by country experience and best practices, as well as multi-stakeholder perspectives and expertise.
A call to action ahead of the AU Heads of State meeting
As governments meet next week on 17-18th February 2024 for the 37th Ordinary Session of the AU Assembly (Heads of State and Government Session), we urge them to prioritise health data governance by:
- Supporting the development of an African Common Position on health data governance that sets out minimum components for national regulation, including engaging in consultations around this.
- Ensuring health data governance as part of AU agendas, including tabling an African Common Position for endorsement in 2025.
- Prioritising health data governance at the World Health Assembly in 2024, including co-hosting a side event on the issue.
This commitment to health data governance extends beyond data—it shapes the very fabric of healthcare and improves health outcomes for the population.
We stand ready to support governments in building resilient, data-driven healthcare systems that serve every African citizen.