Journal article
Governing real-world health data as a public utility
Science (American Association for the Advancement of Science), Vol.391(6789), pp.993-996
03/05/2026
DOI: 10.1126/science.aeb1178
PMID: 41785358
Abstract
The utility model offers a framework for ethical stewardship, patient empowerment, and distributed innovation.
Details
- Title: Subtitle
- Governing real-world health data as a public utility
- Creators
- Melissa A Haendel - University of North Carolina at Chapel HillRyan Ahern - Bellevue CollegeKasie B Bailey - Bellevue CollegeSpyridon Bakas - Indiana University School of MedicineDaniel C Barth-Jones - Covance (United States)Alex Bohl - Mathematica Policy ResearchJiang Bian - Regenstrief InstitutePhilip E Bourne - University of VirginiaRebecca R Boyles - University of North Carolina at Chapel HillChristopher G Chute - Johns Hopkins UniversityJames J Cimino - University of Alabama at BirminghamShaun Grannis - Regenstrief InstituteTerry S Hartman - University of North Carolina at Chapel HillMichelle Holko - Biotech ParkNathan A Hotaling - MD Informatics (United States)Dan J Housman - Ashland (United States)Lawrence E Hunter - University of Illinois ChicagoEric Hurwitz - University of North Carolina at Chapel HillJasmin Phua - Covance (United States)Michael G Kahn - University of Colorado Anschutz Medical CampusDario Kuzmanovic - University of Southern CaliforniaJosh Lemieux - University of North Carolina at Chapel HillJohanna Loomba - University of VirginiaCharisse R Madlock-Brown - University of IowaKenneth D Mandl - Boston Children's HospitalRaja Mazumder - George Washington UniversityJulie A McMurry - University of North Carolina at Chapel HillAndrew J McMurry - Boston Children's HospitalZubin J Modi - University of MichiganRichard A Moffitt - Emory UniversityAbu S M Mosa - University of Alabama at BirminghamNicholas Messina - Covance (United States)Shawn T O'Neil - University of North Carolina at Chapel HillJosh F Peterson - Vanderbilt University Medical CenterEmily R Pfaff - University of North Carolina at Chapel HillJimmy Phuong - University of WashingtonRachel Presskreischer - University of North Carolina at Chapel HillLee Sanders - Stanford UniversityAbeed Sarker - Emory UniversityAlastair Thomson - Haymarket CenterKim M Unertl - Vanderbilt University Medical CenterAnita Walden - University of North Carolina at Chapel HillJim Weinstein - Microsoft (United States)
- Resource Type
- Journal article
- Publication Details
- Science (American Association for the Advancement of Science), Vol.391(6789), pp.993-996
- DOI
- 10.1126/science.aeb1178
- PMID
- 41785358
- NLM abbreviation
- Science
- ISSN
- 0036-8075
- eISSN
- 1095-9203
- Publisher
- AAAS
- Grant note
- Phase V TrialsDimerixBoehringer Ingelheim
M.A.H. and J.A.M. are founders of, and E.H. has ownership in, Alamya Health. D.J.H. is a cofoun-der of Graticule, a for-profit organization involved in RWD and real-world evidence services for life sciences clients. J.P., N.M., and D.C.B.-J. are employees of Datavant. R.A. and K.B.B. are employees of Truveta. Z.J.M. notes funding from Phase V Trials, Dimerix, and Boehringer Ingelheim. J.F.P. is a consultant for Myome. J.W. is an employee of Microsoft. M.H. is affiliated with Computercraft Corporation, Defensive Biotech. K.D.M. has equity in SMART Check and is on the Evidentli Scientific Advisory Board. A.J.M. serves as a board member of the i2b2 tranSMART Foundation.
- Language
- English
- Date published
- 03/05/2026
- Academic Unit
- Nursing
- Record Identifier
- 9985141958202771
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