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A Model for Multi-Institutional Clinical Data Repository.

Karthik Natarajan1, Chunhua Weng1, Soumitra Sengupta1

  • 1Columbia University, New York, NY, USA.

Studies in Health Technology and Informatics
|May 19, 2023
PubMed
Summary
This summary is machine-generated.

This paper outlines a sustainable clinical data infrastructure model, integrating stakeholder needs, data governance, and FAIR principles. It offers best practices based on Columbia University's 30+ years of experience to ensure long-term viability for patient care and research.

Keywords:
clinical data warehousedata governancedata modeling

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Area of Science:

  • Health Informatics
  • Data Science
  • Clinical Research Infrastructure

Background:

  • Developing sustainable clinical data infrastructure is complex.
  • Requires balancing diverse stakeholder needs, data governance, and FAIR principles.
  • Columbia University has over 30 years of experience in this domain.

Purpose of the Study:

  • To define the essential elements (desiderata) for a sustainable clinical data infrastructure.
  • To provide actionable recommendations and best practices for achieving sustainability.
  • To leverage extensive institutional experience in clinical data infrastructure development.

Main Methods:

  • Reflective analysis of 30+ years of clinical data infrastructure design and development.
  • Identification and synthesis of key requirements for sustainability.
  • Formulation of best practices based on institutional experience.

Main Results:

  • A defined set of desiderata for sustainable clinical data infrastructure.
  • Recommendations for integrating stakeholder needs, data governance, and FAIR principles.
  • A framework for achieving financial health and operational longevity.

Conclusions:

  • A sustainable clinical data infrastructure is achievable through careful planning and integration.
  • Best practices derived from long-term experience are crucial for success.
  • Synergizing patient care and clinical research missions is a key outcome of robust infrastructure.