Advancing Health Data Governance For Societal Well-being: A Perspective On Health Digital Common Goods For The G20

The apt use of data for health policies and innovation can enhance access and outcomes. However, the prevalent trend of exploiting personal data collected through digital technologies as economic assets poses risks of surveillance, discrimination, and exploitation. This policy brief provides elements for a health data governance policy aimed at ensuring equitable distribution of economic and health benefits derived from the use of data, while also safeguarding the universal right to health. Complemented by previous G20/T20 intelligence and aligned with the SDG’s 2030 Agenda, the focus is to safeguard individual and community rights and global health priorities. The paper draws on the authors’ previous work (e.g., the 2022 international event “Right to Health and Personal Data Protection” (Idec 2022), co-organized by Idec and South Centre) and the WHO’s works on “Health Data as Global Public Good” and “Report on Ethics and Governance of AI”. The concrete recommendations include how to empower individuals and communities to control their health data; how to foster digital health strategies at the national level; avoiding the enclosure of data (e.g. by IP) by private entities; Al and lack of algorithmic transparency; how recognizing health data as a public good can be translated into good policies; scope for data sharing for commercial purposes; and the issue of consent and secondary use of data in digital health. Crucially, positioning health data as a public good within G20 and key international forums will ensure the imperative to safeguard against misuse and economic exploitation in commercial uses. This paradigm shift emphasizes the primary goal of utilizing health data – ensuring people’s health as a fundamental human right. Through collective efforts and responsible practices, the proposed health data governance policy aims to strike a balance: leveraging data for societal well-being while safeguarding individual and community rights and global health priorities.