Governing real-world health data as a public utility

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Source: Science Magazine

Original: https://www.science.org/doi/abs/10.1126/science.aeb1178?af=R...

Published: 2026-03-05T07:00:10Z

The paper proposes the management of real health data (RWD) as a public service to promote public health. It emphasizes the importance of data governance, which includes policies and procedures for managing clinical data so that it is accurate, complete, consistent and secure[3][5]. Effective governance enables the secondary use of electronic health record (EHR) data for research and accelerates clinical and translational sciences[3][5]. An example is the evolution of governance at the University of Iowa Health Care, where growing demand for data sharing exposed process gaps and led to a formal workflow for external sharing[3][5]. Public-private partnerships, such as during the COVID-19 pandemic, have leveraged RWD for rapid analysis and decision-making, for example through platforms such as HealthVerity for the FDA, CDC, and NCI[1][4]. These approaches included phases of research planning, protocol development, implementation and dissemination of results[1]. Proper management of RWD supports accurate public health, disease surveillance and interventions based on real data[2][6].