Over 150 organisations have signed onto a global letter calling for health data governance to be on the agenda of next year’s World Health Assembly

As health systems become increasingly digitised, the amount of health data that is collected and used continues to grow. Yet many countries’ regulatory systems have not kept pace, leading to missed opportunities to advance health outcomes, while also exposing risk to data misuse. Moreover, there is not yet a comprehensive global framework or agreement to guide the governance of health data across public health systems and policies.

A global health data governance framework – endorsed by governments through a World Health Assembly resolution – would establish an agreement between nations around a set of common standards for the equitable governance of health data. This could then help guide and strengthen national health data governance legislation/regulation. It would promote a common understanding of what data governance should accomplish, supporting more equitable and responsible health data management, while safeguarding data privacy, ownership, and security.

It is vital that such a framework is developed through a transparent and inclusive, multistakeholder process – with the meaningful engagement of civil society and communities being essential. It should also be underpinned by equity and rights-based principles – which have already been endorsed by over 130 organisations – to ensure it prioritises objectives of protecting people, promoting health value, and prioritising equity.

More than 150 organisations from across the globe (including Amref, FIND, PATH, Pathfinder, Save the Children and World Medical Association, just to name a few) have joined forces to express their concern over the weak governance of health data. They have rallied together in this joint letter, spearheaded by Transform Health, to call for concerted and urgent action from governments and WHO to address this pressing issue.

Signatories to the global letter are requesting WHO and its Member States to put Health Data Governance on the agenda of the 152nd WHO Executive Board meeting in January and the 76th World Health Assembly in May. They are calling for the discussion to focus on a WHA resolution to kickstart the development of a global health data governance framework.

Advocating for a global health data governance framework remains a key priority for Transform Health, and together with coalition partners we will continue to push for its development, as well as for Member States to adopt and adapt it to national contexts in the future.

This call to action is open for sign-ons. Please complete this short form to sign on and add your organisation’s logo.