Maximising the Value of Health Data for Public Good: The Health Data Governance Principles
The Helium Team
7 April 2022: On World Health Day, organisations around the world are shining a light on health data, with the launch of the Health Data Governance Principles – the first global set of principles to guide the use of data in health systems. They are grounded in human rights and equity, and oriented towards supporting resilient public health systems that can deliver health for all.
With the rights of individuals and communities at their core, the Principles are clustered around three key objectives: protect people, promote health value, and prioritise equity. They create a common vision where all people and communities can share, use and benefit from health data.
Over 200 digital health experts from 130 organisations around the world came together to develop these Principles in an inclusive, bottom-up process that was stewarded by Transform Health. This included governments, international organisations, civil society, research institutions, and private-sector actors.
To mark World Health Day, Transform Health are calling on governments to back the need for stronger health data governance by endorsing the principles and calling for a World Health Assembly resolution on the development of a global Health Data Governance Framework.
“The Principles are a public good, available for everyone to use. Transform Health is proud to have stewarded this process, and we encourage governments, technology companies and others who collect and use health data to incorporate the Principles in their work. As an initial step, we are calling on governments and organisations to endorse the Principles and commit to the equitable governance of health data in their work,” said Mathilde Forslund, Executive Director of Transform Health.
The Health Data Governance Principles arrive at an opportune time, with the explosion of health data following the COVID-19 pandemic. They lay the ground for the development of a global health data governance framework to regulate health data use, which must be underpinned by principles of human rights and equity.
“The need for stronger health data governance has never been greater. The production and use of health data offers massive benefits for the advancement of personal and public health. But there are also risks of widening health inequities, unless the right frameworks are put in place to manage how that data is collected and used,” said Jai Ganesh Udayasankaran from the Asia eHealth Information Network, one of the organisations involved closely in the development of the Principles.
The Principles are intended to be used by governments, technology companies, international organisations, civil society organisations and other stakeholders to guide the management of health data. They are also a tool to advocate for human rights within health data governance at national, regional, and global levels.
The Health Data Governance Principles were launched on World Health Day at healthdataprinciples.org.
About Transform Health
Transform Health is a global coalition of organisations dedicated to achieving health for all in the digital age. It is building a global movement that brings together individuals, communities, governments, organisations and institutions across sectors – committed to achieving health for all by leveraging digital technologies.
Communication & Engagement Manager, Transform Health