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Synapse
March 7, 2026Science5 citations

Governing real-world health data as a public utility

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MHMelissa A. HaendelRARyan AhernKBKasie B. Bailey

Key Points

  • The aim is to explore the utility model as a means to ethically manage health data for public good.
  • Developing a framework for health data governance
  • Analyzing ethical considerations in data stewardship
  • Engaging stakeholders in the innovation process
  • Promotes ethical management of health data
  • Empowers patients through shared data access
  • Encourages innovation in health technology

Abstract

The utility model offers a framework for ethical stewardship, patient empowerment, and distributed innovation

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Cite This Study

Haendel et al. (2026) studied this question.

synapsesocial.com/papers/69abc2455af8044f7a4eba9ehttps://doi.org/10.1126/science.aeb1178
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  1. 1HEALTHCARE DATA GOVERNANCE ECOSYSTEMS: BALANCING PRIVACY, INNOVATION, AND COMPLIANCE IN REAL-WORLD EVIDENCE PLATFORMS2025
  2. 2HEALTHCARE DATA GOVERNANCE ECOSYSTEMS: BALANCING PRIVACY, INNOVATION, AND COMPLIANCE IN REAL-WORLD EVIDENCE PLATFORMS2025
  3. 3Genomic and Health Data as Fuel to Advance a Health Data Economy for Artificial Intelligence2025
  4. 4Trust and Trade: Patient Perspectives on the Ethics of Real-World Data Monetisation2025
  5. 5Balancing Privacy with Data Sharing for Public Good2024