Establishing data governance for sharing and access to real-world data: a case study

Heath A Davis; Diva Kerkman; Asher A Hoberg; Michele Countryman; Wendy Beaver; Kiley Bybee; James M Blum; Boyd M Knosp

doi:10.1093/jamiaopen/ooaf041

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Establishing data governance for sharing and access to real-world data: a case study

Journal article

Open access

Peer reviewed

Establishing data governance for sharing and access to real-world data: a case study

Heath A Davis, Diva Kerkman, Asher A Hoberg, Michele Countryman, Wendy Beaver, Kiley Bybee, James M Blum and Boyd M Knosp

JAMIA open, Vol.8(3), ooaf041

06/2025

DOI: 10.1093/jamiaopen/ooaf041

PMCID: PMC12206003

PMID: 40584737

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Abstract

Data governance, the policies, and procedures for managing data, is a critical factor for secondary use of clinical data for research. This paper describes the evolution of an academic health-care organization's data governance for research, development of an external data sharing process, implementation of related processes, continuous improvement, and ongoing observations of data governance maturity. The program was designed to improve the access to and sharing of real-world data for research. Using a combination of qualitative and quantitative methods, we evaluated the program's effectiveness. Our results describe a significant improvement in data accessibility as seen in new data-driven performance indicators and in data understanding indicated by new processes, policies, and strategies. The paper outlines the development of a data governance process at an academic health center to support external data sharing, emphasizing the importance of data literacy, cross-office collaboration, and structured workflows to manage complex review requirements. The formalized process improved data access, identified gaps, and enabled continuous quality improvement, though it introduced new bottlenecks and required navigating multi-office reviews and researcher education. These findings suggest data governance practices that may apply to other institutions.

external data sharing for research

data governance

real-world data

research data

Enterprise Data Warehouse for Research

clinical research data

Details

Title: Subtitle: Establishing data governance for sharing and access to real-world data: a case study
Creators: Heath A Davis - University of Iowa
Diva Kerkman - University of Iowa
Asher A Hoberg - University of Iowa
Michele Countryman - University of Iowa
Wendy Beaver - University of Iowa
Kiley Bybee - University of Iowa Health Care
James M Blum - University of Iowa
Boyd M Knosp - University of Iowa
Resource Type: Journal article
Publication Details: JAMIA open, Vol.8(3), ooaf041
DOI: 10.1093/jamiaopen/ooaf041
PMID: 40584737
PMCID: PMC12206003
NLM abbreviation: JAMIA Open
ISSN: 2574-2531
eISSN: 2574-2531
Publisher: International American Medical Informatics Association
Grant note: National Center for Advancing Translational Sciences of the National Institutes of Health: UL1TR002537 Utility Public-Private Partnership (P3) Award-The Iowa Health Data Resource: Building the Future of Health Informatics at the University of Iowa
The research was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1TR002537 and the Utility Public-Private Partnership (P3) Award-The Iowa Health Data Resource: Building the Future of Health Informatics at the University of Iowa. https://strategicplan.uiowa.edu/pub-lic-private-partnership-p3/p3-program-support-strategic-pri-orities/p3-proposals-funded-fy-2022
Language: English
Date published: 06/2025
Academic Unit: Anesthesia; Medicine Administration
Record Identifier: 9984843601402771

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