Strengthening health data governance in the age of AI: The risk of inaction

In the digital age and with the extensive use of technology across all facets of our lives, the issue of how our data - and particularly health data - is governed is a rising concern amongst populations and growing on political agendas. Advances in AI for health have catapulted the generation of data, making this an even more pressing issue.

Data needs to be effectively and equitably governed to both maximise its use for improved health outcomes and public benefit, while protecting and mitigating its misuse. The governance that is needed has various facets, but particularly urgent is ensuring the legislative and regulatory guardrails are in place to protect data and uphold people’s rights, while supporting responsible data use.

There is no global standard for legislation and regulation governing health data, with countries taking different approaches and at varied levels of maturity. There has been notable regional progress to address this issue, from commitments in regional strategies and frameworks, to regional cooperation towards a common vision. Regional and global cooperation offer important opportunities to foster learning and build country consensus and action. There is huge value in building on regional approaches towards a global commitment on health data governance.

The development and endorsement of a global health data governance framework provides an opportunity to build on experiences and good practices, at both national and regional levels, towards establishing a level of consensus around the essential elements that should be addressed through national legislation. It would also offer a more harmonised approach to health data governance which would foster an enabling, yet secure, environment for cross-border data sharing. This would also help take forward government commitments made in the Global Digital Compact through sectoral action.

OBJECTIVES

This side event at the 78th World Health Assembly will bring together regional and national leaders to learn from and build on approaches and experiences in strengthening health data governance, with the aim of stimulating global action on the issue. It will explore what is needed to prioritise health data governance on the agenda of the World Health Assembly, to enable a discussion amongst Member States around a global framework and commitment on health data governance. It will also explore recent tools and resources, which provide a starting point for discussions around a global framework, such as the Model Law on health data governance.

The objectives of the side event are to:

a. Share and learn from regional and national approaches on health data governance.

b. Present the Model Law on health data governance and other relevant resources that offer inputs towards the development of a global framework.

c. Identify pathways towards securing health data governance on the agenda of the World Health Assembly and stimulating action towards the development of a global health data governance framework, including building political will to make this happen.

Register to join this event in person in Geneva.

Refreshments will be provided at the venue.