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Over the last several decades, the collection and use of health data have grown in complexity and have become increasingly indivisible from the operation of health systems and the provision of health services.

With this increase in data use, the need for robust and equitable governance of health data has also increased. More countries and regions around the world are instituting health data governance policies and legislation—but there is not yet a comprehensive, globally unifying set of principles to inform such governance, especially one that focuses on equity.

Universal Health Coverage must be a core aspect of the design and development of data-driven health systems. Progress towards UHC has also guided the development of the Health Data Governance Principles. These Principles bring a human rights and equity lens to the use of data within health systems and are oriented toward supporting sustainable and resilient public health systems.

Health Data Governance Principles

Transform Health has been stewarding the development of representative and human rights-based Health Data Governance Principles grounded in Universal Health Coverage.

The Principles are framed around three interconnected objectives:

1. Protect people – individuals and communities;
2. Promote health value – through data sharing and innovative uses of data; and
3. Prioritize equity – equitably distribute the benefits that arise from the use of data within health systems.

The Principles bring a human rights and equity lens to digital health, and are oriented toward supporting sustainable and resilient public health systems. They seek to align stakeholders around core tenets of data governance, to guide behaviours, actions and policies, creating an environment where all people and communities can share, use, and benefit from health data.

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The principles target governments, developers and other stakeholders that collect and use health data and can eventually be used as a mechanism to hold them accountable to equity and human rights agendas.

The current draft of the Principles recognise and build on other important principles and initiatives and are aligned with the recommendations coming out of the report of the Lancet and Financial Times Commission on governing health futures 2030.