At the end of January, the WHO Executive Board is meeting to decide the agenda of the World Health Assembly and any resolutions to be considered. It is crucial that the pressing issue of health data governance is tabled and that a resolution to develop a global framework is on the agenda for the 76th World Health Assembly in May 2023.
Health data has emerged as an essential tool for strengthening health systems and responding to future health challenges. However, national, regional and global rules to govern the collection and use of data have not kept pace with the growing potential for data to support better health and well-being, or the potential harms arising from data misuse. To harness the potential, and manage the risks, of health data sharing within and across borders, countries must work together to develop a set of common regulatory standards for the governance of health data.
To build trust and maximise the public benefits of health data, Transform Health calls upon Member States to commit to the development of a global health data governance regulatory framework, based on a set of equity and human rights-based Health Data Governance
Principles. Such a framework, endorsed by governments through a World Health Assembly resolution, would establish an agreement between nations on a set of common regulatory standards for the governance of health data, which can be contextualised and domesticated
through national legislation. This would ensure that health data is shared and used for the public good whilst protecting individual rights, and lay the foundation for improved public trust in health systems – one where individuals feel protected, respected and in control of their own data while allowing institutions working to protect the health and well-being of the population to access and use data for public good.
It is vital that a global framework is developed through a transparent and fully inclusive, multistakeholder process, including the meaningful engagement of civil society, communities and youth. This would ensure the inclusion of perspectives and expertise of those whose data is
being collected and used.
Transform Health is convening a breakfast briefing for member states on health data governance during the WHO Executive Board Meeting in Geneva, on the 31st of January. Find out more and register here.
As the WHO Executive Board convenes next week, Transform Health urges Member States to:
- Propose the inclusion of health data governance on the agenda for the 76th World Health Assembly in May 2023 and support a resolution mandating WHO to develop a global framework.
- Participate in a Member State briefing on health data governance being organised ahead of the Executive Board meeting by Transform Health, AeHIN, RECAINSA, PATH and HELINA on 31 January.
- Endorse the equity and human rights-based Health Data Governance Principles ensuring these underpin a global framework.
- Sponsor a Member State side event on health data governance at the World Health Assembly.
Over 150 organisations have signed on to a letter to the WHO, calling for swift action on the steps above. Transform Health and our partners urge governments not to miss this opportunity to unlock the power of data for health, nor the opportunity to harness the digital transformation of health that can help deliver health for all.