Governing real-world health data as a public utility

Authors

• Melissa A. Haendel, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Ryan Ahern, Truveta, Bellevue, WA, USA.
• Kasie B. Bailey, Truveta, Bellevue, WA, USA.
• Spyridon Bakas, Indiana University School of Medicine, Indianapolis, IN, USA.
• Daniel C. Barth-Jones, Datavant, Phoenix, AZ, USA.
• Alex Bohl, Mathematica, Princeton, NJ, USA.
• Jiang Bian, Indiana University School of Medicine, Indianapolis, IN, USA.
• Philip E. Bourne, University of Virginia, Charlottesville, VA, USA.
• Rebecca R. Boyles, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Christopher G. Chute, Johns Hopkins University, Baltimore, MD, USA.
• James J. Cimino, Department of Biomedical Informatics and Data Science, University of Alabama at Birmingham, Birmingham, AL, USA.
• Shaun Grannis, Regenstrief Institute, Indianapolis, IN, USA.
• Terry S. Hartman, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Michelle Holko, Defensive BioTech, Bethesda, MD, USA.
• Nathan A. Hotaling, Axle Informatics, Rockville, MD USA.
• Dan J. Housman, Graticule, Dedham, MA, USA.
• Lawrence E. Hunter, University of Chicago, Chicago, IL, USA.
• Eric Hurwitz, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Jasmin Phua, Datavant, Phoenix, AZ, USA.
• Michael G. Kahn, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
• Dario Kuzmanovic, University of Southern California, Los Angeles, CA, USA.
• Josh Lemieux, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Johanna Loomba, University of Virginia, Charlottesville, VA, USA.
• Charisse R. Madlock-Brown, University of Iowa, Iowa City, IA, USA.
• Kenneth D. Mandl, Computational Health Informatics Program, Boston Children's Hospital, Boston, MA, USA.
• Raja Mazumder, George Washington University, Washington, DC, USA.
• Julie A. McMurry, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
• Andrew J. McMurry, Computational Health Informatics Program, Boston Children's Hospital, Boston, MA, USA.
• Zubin J. Modi, University of Michigan, Ann Arbor, MI, USA.
• Richard A. Moffitt, Emory University, Atlanta, GA, USA.
• Abu S. Mosa, Department of Biomedical Informatics and Data Science, University of Alabama at Birmingham, Birmingham, AL, USA.
• Nicholas Messina, Datavant, Phoenix, AZ, USA.

Document Type

Journal Article

Publication Date

3-5-2026

Journal

Science (New York, N.Y.)

Volume

391

Issue

6789

DOI

10.1126/science.aeb1178

Abstract

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

APA Citation

Haendel, Melissa A.; Ahern, Ryan; Bailey, Kasie B.; Bakas, Spyridon; Barth-Jones, Daniel C.; Bohl, Alex; Bian, Jiang; Bourne, Philip E.; Boyles, Rebecca R.; Chute, Christopher G.; Cimino, James J.; Grannis, Shaun; Hartman, Terry S.; Holko, Michelle; Hotaling, Nathan A.; Housman, Dan J.; Hunter, Lawrence E.; Hurwitz, Eric; Phua, Jasmin; Kahn, Michael G.; Kuzmanovic, Dario; Lemieux, Josh; Loomba, Johanna; Madlock-Brown, Charisse R.; Mandl, Kenneth D.; Mazumder, Raja; McMurry, Julie A.; McMurry, Andrew J.; Modi, Zubin J.; Moffitt, Richard A.; Mosa, Abu S.; and Messina, Nicholas, "Governing real-world health data as a public utility" (2026). GW Authored Works. Paper 8928.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/8928

Department

Biochemistry and Molecular Medicine