The Health Data Governance Principles bring a human rights and equity lens to the use of data within and across health systems. They are oriented towards supporting sustainable and resilient public health systems that can deliver Universal Health Coverage (UHC).
Health data governance must protect individuals, groups and communities against harm and violations at every stage of the data lifecycle. It should balance protection and rights with the societal value of data use for health.
Health data governance should reinforce trust in data systems and practices.
Processes for collecting, processing, storing, using, sharing and disposing data should all employ robust security mechanisms.
Health data governance should enhance health system efficiency and resilience, improve health access, and advance health equity towards UHC.
Data collection and sharing is a prerequisite for creating value from health data but must be done in ways that support equity and human rights.
Governance approaches must enable innovation and flexibly accommodate new technologies and uses of data.
Equity in health data governance must ensure equitable representation in data of all individuals, groups and communities; extend to include meaningful participation of all groups in decision-making; and equitable access to data-generated health value about health data systems
The Principles create a common vision where all people and communities can share, use and benefit from health data. They are also a critical step towards the development of a global framework for health data governance. We encourage stakeholders to endorse the Principles to help maximise the public value of health data whilst protecting individual rights.
Protect as individuals, as groups, and as communities
Through data sharing and innovative uses of data
by ensuring equitable distribution of benefits that arise from the use of data in health systems
Health data governance must ensure protection for individuals, groups and communities against data-related harm and violations. Protection for individuals is often embodied in general data protection laws. However, due to its potentially sensitive nature, health data requires additional specialised protections in law and in data practices for individuals and communities.
Health data governance must maximise the value obtained from the use of data to improve health outcomes for both individuals and society. Often, this requires some forms of data to be shared widely. The aggregating and sharing of health data must be done in a manner that protects individual, group and community rights. Further, health data governance must support innovation.
Health value created by the use of data must equitably benefit individuals and communities. Data is contributed by people, whether as individuals or as communities, and so people should have an equitable stake in the health value that their data generates.