INTRODUCTIONTaking place during 79th UN General Assembly (UNGA79), Transform Health, WHO, the Health Data Collaborative, OECD, PATH, PMNCH, and Young Experts Tech for Health (YET4H) will co-host an in-person side event on
Strengthening Health Data Governance in the Digital Age through Leadership, Collaboration, Action. The event will take place in person as part of the Science Summit for the UN Sustainable Development Goals (SSUNGA79), which complements the United Nations Summit of the Future, where governments will endorse the Global Digital Compact. This represents a critical moment to galvanise action and consensus on health data governance.
During this event, we will hear personal and community perspectives on what health data governance means to them and their expectations of governments and other actors in this regard. This will be followed by a government panel exploring national experiences, leadership and needed action. The session aims to build political support to strengthen health data governance, including through consensus and commitments around a global (and regional) health data governance framework and stronger national legislation.
SESSION OVERVIEWConcerted effort at multiple levels is needed to strengthen health data governance. This is essential to fully harness the potential of health data for public benefit and improved health outcomes, towards UHC progress, while managing risks, protecting individual rights, and ensuring people’s data is protected from misuse. Bringing together countries and other stakeholders this provides an opportunity to learn from and build on experiences and good practices, and forge consensus around what is needed to strengthen health data governance frameworks.
Health data are the foundation of 21st century health systems, enabling artificial intelligence, augmenting health care professionals, supporting digital transformation, and empowering individuals to achieve their personal health outcomes. Health data need governance that recognises its value, as both an individual and public good, that forms the strong foundation of health care, prevention, and promotion – all aspects of Universal Health Coverage. Without an effective approach to health data, investments from the health sector related to digital and AI will fail to achieve objectives and risk expanding existing digital divides into digital canyons.
Towards this end, Transform Health, OECD, Africa CDC, HDC, AeHIN, HELINA, RECAINSA, and YET4H have been supporting the
development of a draft model law on health data governance, which
sets out core areas, legislative guidance and reference legal text to support more effective and equitable health data governance. The model law has been informed by
equity and rights-based principles, the
OECD Recommendation on Health Data Governance, among other national, regional and international commitments and best practice.
It has been developed through a bottom up, consultative process, engaging nearly 1000 stakeholders from across the globe.
This is an important step towards a global framework - and global standard and blueprint for health data governance legislation. The
endorsement of a global framework by governments through a World Health Assembly resolution and regional mechanisms would help build consensus across countries and stakeholders around essential areas that should be addressed through national legislation; establish a level of harmonisation and compatibility in national approaches to foster greater legal coherence across jurisdictions; and importantly, it would provide a resource to support governments in strengthening national frameworks.
Government leadership is critical to move towards more robust legislation and regulation - to govern data as a public good - while ensuring diverse stakeholders and civil society remain meaningfully engaged. Building on growing momentum and political support, including during numerous events on the sidelines of this year’s World Health Assembly, this session aims to build support to ensure health data governance is prioritised on the agenda of the Assembly in May 2025. This would enable a much needed discussion amongst Member States around necessary action.
The objectives of this session are to:- Hear community voices and perspectives (e.g. youth, women, vulnerable groups) on what health data governance means to them and their expectations of governments and other actors on this issue.
- Understand the needs of governments in strengthening health data governance approaches, including learning from promising national and regional approaches.
- Build political support for action to strengthen health data governance, including through consensus and alignment around what is needed and endorsement of a global health data governance framework.
For this session we propose two components. The first would bring a personal and rights-based angle to the issue of health data governance and what it means to communities and individuals. It would highlight the
My Data Our Health campaign which aims to engage and empower communities around the issue. The second component would focus on national experiences and political action to build consensus and explore how to take this agenda forward, for example through a World Health Assembly resolution and what is needed to strengthen national approaches.
