Policy Brief: Strengthening Health Data Governance Benefits All

Author(s): Frank Smith, Campaign Lead, Transform Health @FDSmith_

Transform Health believes that digital technology and data if effectively and equitably deployed, are enabling forces that can strengthen health systems and help people to attain and maintain good health and wellbeing.

The way the world governs health data has never been more pivotal than it is in this digital age. To create an environment where all people and institutions can share, use, and benefit from health data, an inclusive and collaboratively developed global framework for the governance of health data is needed that realises health data as a global public good whilst protecting individual rights.

Our new policy brief outlines why we need a global governance framework for health data and how Transform Health will help to make this happen.

Transform Health commissioned PATH to undertake a landscape analysis of existing data governance regulations and approaches, and to identify gaps in ongoing efforts to strengthen health data governance. 

Four key findings emerged from the landscape analysis that will inform Transform Health’s upcoming work on health data governance:

Greater alignment in approaches to health data governance and data privacy is needed 

Transform Health is calling for the development and adoption of a global health data governance framework to help overcome the existing challenges posed by having conflicting and overlapping policies and regulations.

Data governance regulation should be human-centered and inclusive

To meet the needs of everyone, Transform Health will campaign for a health data governance framework to be developed through a participatory, human-centered process that includes diverse groups of end-users.

Foundational principles of health data governance must be defined

Transform Health will facilitate an inclusive process to develop a set of global health data governance principles.

Transform Health is well-positioned to mobilise support for global health data governance framework

Transform Health will use its growing platform to raise awareness among the public and policymakers about the need for stronger governance of health data.

Author(s) Bio:

Frank Smith leads the Campaign Circle at Transform Health. You can follow him on Twitter.

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