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Area of Science:

  • Health Informatics
  • Clinical Research Informatics
  • Data Science in Healthcare

Background:

  • The Patient-Centered Outcomes Research Network (PCORnet) is establishing thirteen regional clinical data research networks (CDRNs) across the U.S.
  • Data characterization cycles are underway for over 80 data-contributing institutions (nodes) within PCORnet, utilizing a common data model.
  • Network readiness for multi-institution research is crucial, with a focus on data quality and fidelity.

Purpose of the Study:

  • To highlight the underappreciated dimension of understanding a CDRN's federated data nature for network readiness.
  • To propose a method for grasping the metadata of a CDRN using visualizations.
  • To build upon the HealthLNK Data Repository as a foundation for this approach.

Main Methods:

  • Developing a visualization approach to understand the metadata of a Clinical Data Research Network (CDRN).
  • Leveraging the HealthLNK Data Repository, a precursor to the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) CDRN.
  • Focusing on the federated nature of CDRN data for readiness assessment.

Main Results:

  • The study outlines a novel approach to visualize CDRN metadata.
  • This method aims to provide insights into the federated data landscape of CDRNs.
  • The approach is built upon existing infrastructure like the HealthLNK Data Repository.

Conclusions:

  • Understanding the federated nature of CDRN data is vital for assessing network readiness.
  • Visualization techniques offer a promising avenue for grasping complex CDRN metadata.
  • This work contributes to improving the evaluation of multi-institution research readiness in networks like PCORnet.