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Peer-Reviewed Publication
Science2026;391(6789):993-996.March 5, 2026Journal Article

Governing real-world health data as a public utility.

Melissa A Haendel1, Ryan Ahern2, Kasie B Bailey2, Spyridon Bakas3, Daniel C Barth-Jones4, Alex Bohl5, Jiang Bian3,6, Philip E Bourne7, Rebecca R Boyles1, Christopher G Chute8, James J Cimino9, Shaun Grannis6, Terry S Hartman1, Michelle Holko10, Nathan A Hotaling11, Dan J Housman12, Lawrence E Hunter13, Eric Hurwitz1, Jasmin Phua4, Michael G Kahn14, Dario Kuzmanovic15, Josh Lemieux1, Johanna Loomba7, Charisse R Madlock-Brown16, Kenneth D Mandl17, Raja Mazumder18, Julie A McMurry1, Andrew J McMurry17, Zubin J Modi19, Richard A Moffitt20, Abu S M Mosa9, Nicholas Messina4, Shawn T O'Neil1, Josh F Peterson21, Emily R Pfaff1, Jimmy Phuong22, Rachel Presskreischer1, Lee Sanders23, Abeed Sarker20, Alastair Thomson24, Kim M Unertl21, Anita Walden1, Jim Weinstein25
1University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
2Truveta, Bellevue, WA, USA.
3Indiana University School of Medicine, Indianapolis, IN, USA.
4Datavant, Phoenix, AZ, USA.
5Mathematica, Princeton, NJ, USA.
6Regenstrief Institute, Indianapolis, IN, USA.
7University of Virginia, Charlottesville, VA, USA.
8Johns Hopkins University, Baltimore, MD, USA.
9Department of Biomedical Informatics and Data Science, University of Alabama at Birmingham, Birmingham, AL, USA.
10Defensive BioTech, Bethesda, MD, USA.
11Axle Informatics, Rockville, MD USA.
12Graticule, Dedham, MA, USA.
13University of Chicago, Chicago, IL, USA.
14University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
15University of Southern California, Los Angeles, CA, USA.
16University of Iowa, Iowa City, IA, USA.
17Computational Health Informatics Program, Boston Children's Hospital, Boston, MA, USA.
18George Washington University, Washington, DC, USA.
19University of Michigan, Ann Arbor, MI, USA.
20Emory University, Atlanta, GA, USA.
21Vanderbilt University Medical Center, Nashville, TN, USA.
22University of Washington, Seattle, WA, USA.
23Stanford University, Stanford, CA, USA.
24AI Strategy, Haymarket, VA, USA.
25Microsoft Research, Redmond, WA, USA.
PubMed DOI

Abstract

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

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