Stronger Health Data Governance through Country Leadership and Consensus

To fully harness the potential of health data for public benefit and improved health outcomes, while also 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. While several countries and regions are taking steps to address this, approaches vary. By countries and other stakeholders coming together, this provides an opportunity to build on experiences and good practices, and establish a level of consensus around the essential elements that should be included in national legislation and regulation. Towards this end, Transform Health and partners have been catalysing and supporting the development of a draft model law on health data governance, which sets out core elements, legislative guidance and reference legal text. It aims to build consensus and alignment around what is needed, while serving as a resources for government.

Government leadership on this issue is critical. Building on growing political support around the need to strengthen health data governance legislation and regulation, this side event will bring together governments and experts in this area to build consensus and explore how to take this agenda forward through a World Health Assembly resolution and what is needed to strengthen national approaches. The draft model law on health data governance will be presented during the session. The event is co-hosted by Transform Health, Africa CDC, OECD, WHO, the Health Data Collaborative, Fondation Botnar, Asia eHealth Information Network (AeHIN), Pan African Health Informatics Association (HELINA), and RECAINSA.