Transform Health asks from the WHO Executive Board

Technology is rapidly changing the world we live in. As our health systems become increasingly digitalised, this has increased the amount of health data that is collected and used. This has sparked the need for stronger – and more equitable – governance of that data. Though some countries have developed health data governance policies and legislation, this legislation does not lend itself to regional or international cooperation and exchange of data for public good. There is currently no comprehensive, globally unifying or agreed principles, nor a global framework, to guide the governance of health data, which can unify public health approaches and systems around the objective of equity and UHC. Global alignment will promote a common understanding of what data governance should accomplish.

Putting equity, rights and trust at the centre of health data governance

A global health data governance framework is urgently needed. Such a framework must be underpinned by equity and human-rights based principles. This would ensure that national legislation and regulation on the effective use of health data and data for health has full public support and confidence, will provide researchers and health professionals the clarity and support they need to do their work, and will support the use of digital technologies and data for public good. Transform Health and partners are stewarding the development of a set of Health Data Governance Principles, which bring a human rights and equity lens to the use of data within and across health systems. The Principles are oriented towards supporting sustainable and resilient public health systems that can deliver UHC. Developed through an inclusive, bottom-up process (including a recent public consultation), they bring together contributions from over 200 experts across diverse geographies, sectors and stakeholders. They will be available for early endorsement later this month.
  Though some countries have developed health data governance policies and legislation, this legislation does not lend itself to regional or international cooperation and exchange of data for public good.
Also read: Making the Case for Stronger Health Data Governance – Transform Health

A critical moment for action 

We call on governments to back the need for stronger health data governance by supporting the development, and subsequent adoption, of a global health data governance framework. This year’s 150th Executive Board meeting and the 75th World Health Assembly in May provide key opportunities to drive progress on this agenda. As members of the WHO Executive Board meet this week, we urge them to:
Governments must also ensure that health data governance is prioritised as part of other key global, regional and national agendas and platforms, such as the G20, UNGA, key regional meetings, among others. These are vital steps to ensure the participatory, equitable and efficient governance of health data so that all people can benefit equally from the collection and use of health data, in support of UHC.
 
  We call on governments to back the need for stronger health data governance by supporting the development, and subsequent adoption, of a global health data governance framework.