From leadership research to district action: Establishing data governance for sharing and access to real-world data: a case study

AI-assisted editorial implementation guide. Proposed district actions are separate from the original authors’ findings and recommendations. Independent peer review of this guide is not asserted.

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Evidence and transfer

Education-related source: verify which participants, institutions and outcomes were actually studied before district adoption. Source publication type: case-report. License and identity checks do not establish study quality or causality.

Original authors’ abstract, reproduced under the source license:

Abstract Importance Data governance, the policies, and procedures for managing data, is a critical factor for secondary use of clinical data for research. Objectives 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. Materials and Methods 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. Results 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. Discussion 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. Conclusion These findings suggest data governance practices that may apply to other institutions. Keywords: data governance, real-world data, clinical research data, Enterprise Data Warehouse for Research, external data sharing for research, research data

Study methods

A Donabedian structure, process, outcome approach was taken to guide this pilot.6,7 Preparation activities included highlighting the problem, engaging leadership, and establishing a working group. Process review and refinement included identifying key elements, evaluating communication and literacy, and defining needed workflows.

Limitations

A limitation of this approach is that it requires review from a minimum of 5 offices which can cause delays when corresponding documentation is incongruent (eg, information in the sharing request does not match the information in the IRB protocol). The process may be perceived as cumbersome, especially for researchers navigating this process for the first time. Community outside of HCE had differing views on whether this process is necessary, particularly beyond the scope of the IRB approval process. In this, there was an opportunity to raise awareness and literacy around data governance and sharing data external to health care. Although each office strives to inform the research community of various requirements, researchers are ultimately responsible for understanding and following the required practices. Additionally, while this process provides a single system for governance and review, with multiple levels of oversight and systems connected with complex research needs, researcher awareness, and adherence are a challenging gap to overcome.

A 90-day district inquiry

Days 1–15 · Appraise. Read the source methods, recruitment, comparator, outcomes and limitations. Record how the study setting differs from your district and which claim the design can support.
Days 16–30 · Design. Select one recurring district decision. Publish the decision owner, evidence requirements, consultation process and appeal route; test the process on a bounded low-risk decision. Agree participation, privacy protections, baseline and stopping rules before starting.
Days 31–60 · Observe. Collect the pre-agreed measures, keep a log of implementation changes and invite confidential voluntary feedback. Preserve existing support for staff and learners.
Days 61–90 · Decide. Track decision time, unresolved objections, documented reasons, appeals and access differences. Review whether the process changes who can participate and who carries the burden. Make a dated decision to stop, revise or extend the inquiry.

Board decision brief

Present the local problem, source setting, evidence limits, intervention, responsible owner, total cost, measured changes and uncertainty. Separate staff perceptions, implementation measures and student learning outcomes.

Attribution and reuse

Heath A Davis; Diva Kerkman; Asher A Hoberg; Michele Countryman; Wendy Beaver; Kiley Bybee; James M Blum; Boyd M Knosp. Establishing data governance for sharing and access to real-world data: a case study. JAMIA Open (2025-06-23). https://doi.org/10.1093/jamiaopen/ooaf041

Prepared 2026-11-07. Source authorship and DOI are preserved. The abstract and source passages are attributed extracts; this editorial guide is offered under the same CC BY 4.0 license.