Governing real-world health data as a public utility

Q: What does this research mean for the field?

The utility model provides a framework for ethical stewardship, patient empowerment, and distributed innovation in the governance of real-world health data. Novelty: ClaimNovelty.METHODOLOGICAL. Consensus alignment: ConsensusAlignment.NEUTRAL.

Melissa A. Haendel; Ryan Ahern; Kasie B. Bailey; Spyridon Bakas; Daniel C Barth-Jones; Alex Bohl; Jiang Bian; Philip E. Bourne; Rebecca Boyles; Christopher G. Chute; James J. Cimino; Shaun Grannis; Terry S. Hartman; Michelle Holko; Nathan A. Hotaling; Dan Housman; Lawrence Hunter; Eric Hurwitz; Jasmin Phua; Michael G. Kahn; Dario Kuzmanovic; Josh Lemieux; Johanna Loomba; Charisse Madlock-Brown; Kenneth D. Mandl; Raja Mazumder; Julie A. McMurry; Andrew J. McMurry; Zubin J. Modi; Ryan McGrath; Abu S. M. Mosa; Nicholas Messina; Shawn T. O’Neil; Josh F. Peterson; James Champion; Jimmy Phuong; Rachel Presskreischer; Lee Sanders; Abeed Sarker; Alastair Thomson; Kim M. Unertl; Anita C. Walden; Jim Weinstein

doi:10.1126/science.aeb1178

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

Implication

This framework proposes ethical stewardship and patient empowerment for innovating health data management.

Abstract

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

Discussion

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Cite This Study

Haendel et al. (2026) studied this question.

synapsesocial.com/papers/69abc2455af8044f7a4eba9e https://doi.org/10.1126/science.aeb1178

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Governing real-world health data as a public utility

Key Points

Implication

Abstract

Discussion

Cite This Study

Governing real-world health data as a public utility

Key Points

Implication

Abstract

Discussion

Cite This Study

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