Stronger health data governance is a fundamental prerequisite to digitally enabling and
transforming health systems.
Digital transformation of health systems includes scaling up the use of existing technological tools such as
electronic medical records and health management information systems, but also innovation such as novel telemedicine
approaches and digital epidemiology.
We are
calling for a global health data governance framework, underpinned by human rights-based principles, to be
endorsed by governments by May 2024.
Such digital technologies depend fundamentally on, and generate vast amounts of, data:
personal and non-personal, health and non-health. Rights-based, reliable and representative health data governance
is crucial to digital transformation. When utilised responsibly, digital health technologies and high-quality data
can help accelerate health equity by making health systems stronger, more effective, more accessible, and more
responsive to the needs of the populations they serve.
Calling for a global health data governance framework
Since its inception, Transform Health has advocated and campaigned for a global health data
governance framework that
allows for meaningful and trustworthy use of health data, while safeguarding data privacy, ownership and security.
A global governance framework on health data would enable the implementation of globally agreed and standardised
regulation to govern the collection and use of health data, ensuring it maximises public benefit within and across
borders, whilst safeguarding individual rights. Effective health data governance also requires regional, national
and community level guidance and expertise that addresses the cultural and contextual needs of citizens and
communities
Governments must be in the driver’s seat, as they play the leading role to endorse a framework through a World Health Assembly resolution and ultimately hold the responsibility for implementing it at the country level through national legislation and regulation. However, it is important that a framework is developed through an inclusive and consultative multi-stakeholder process to leverage and reflect wide perspectives and expertise from across stakeholder groups and experts. Diverse stakeholders should be meaningfully engaged in the process, including governments, academia, multilaterals and technical agencies, regional bodies, civil society and communities, among others.
The Health Data Governance Principles | #HealthDataPrinciples
A global health data governance framework must be underpinned by equity and human
rights-based principles.
In
2021-22, Transform Health led the development of the Health Data Governance Principles
, which bring a human rights and equity lens to the use of data within and across health systems. Developed
through an
inclusive, bottom-up process
, they bring together contributions from over 200 experts across diverse geographies, sectors and stakeholders.
The Health Data
Governance Principles
are the first global set of principles, applicable across stakeholder groups, to guide the use of data in
health systems. They are oriented towards supporting sustainable and resilient public health systems that
can deliver Universal Health Coverage (UHC). 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.
EXPLORE THE PRINCIPLES 
The Principles have been endorsed by 150+ organisations! Endorse the Principles now.
Calls to Action
- Support the development of a Global Health Data Governance Framework for endorsement by governments through a World Health Assembly resolution, and subsequent implemented through national legislation and regulation.
- Ensure a Global Framework is developed through an inclusive process; informed by country good practices; builds on existing norms and standards; and underpinned by the equity and rights-based Health Data Governance Principles.
- Endorse the Health Data Governance Principles.
- Prioritise health data governance as part of global, regional and national agendas.
