Sustainability considerations for clinical and translational research informatics infrastructure

Summary

This paper documents the findings of an informatics workgroup within the Clinical and Translational Science Awards network investigating how biomedical informatics infrastructure is structured, governed, and funded across academic health centres engaged in translational research. Survey data from 42 institutions revealed heterogeneous governance models and funding mechanisms, though core components such as electronic data capture and electronic health records repositories showed mixed funding approaches, whilst regulatory, security, and data warehouse systems were predominantly funded as institutional infrastructure. The findings provide guidance for academic health centres and funders planning robust, sustainable informatics infrastructure.

UK applicability

Whilst conducted in the United States context, the governance and funding frameworks identified may be informative for UK academic health centres and the National Health Service planning translational research informatics infrastructure, though UK institutional structures, funding mechanisms (NIHR, UKRI), and regulatory environments differ significantly and would require contextualised adaptation.

Key measures

Governance structures, funding models (fee-for-service, extramural grants, institutional support), and sustainability patterns for electronic data capture systems, electronic health records repositories, regulatory systems, security systems, data warehouses, and clinical trials management systems

Outcomes reported

The study surveyed 42 informatics leaders at Clinical and Translational Science Awards network institutions to identify the scope, governance models, and funding mechanisms for biomedical informatics infrastructure supporting translational research. Results documented significant variation in governance and sustainability across core informatics components, with distinct funding patterns emerging for different system types.

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