Surveying a new multi-institution clinical data research network

Marc Rosenman*, Margaret Madden, Elissa Oh, Satyender Goel, Abel Kho

*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingConference contribution


Cultivated by the Patient-Centered Outcomes Research Network (PCORnet), thirteen regional clinical data research networks (CDRNs) are taking shape across the U.S. The PCORnet common data model was carefully planned, and the data marts assembled by the more than 80 data-contributing institutions (nodes) are undergoing, in 2016-2017, a series of data characterization cycles. PCORnet will adjudge each node's - and thereby, in a significant way, each CDRN's - readiness or unreadiness for multi-institution research. Certifying each node's quality and fidelity is of course essential. But in understanding network readiness there is an additional, vital dimension - one that has received too little attention. It is the development of knowledge about the nature of a CDRN's data, in its federated sense. With visualizations, how might one grasp the meta-data of a CDRN? We outline an approach that builds upon the HealthLNK Data Repository, a forerunner to the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) CDRN.

Original languageEnglish (US)
Title of host publicationMEDINFO 2017
Subtitle of host publicationPrecision Healthcare through Informatics - Proceedings of the 16th World Congress on Medical and Health Informatics
EditorsZhao Dongsheng, Adi V. Gundlapalli, Jaulent Marie-Christine
PublisherIOS Press
Number of pages5
ISBN (Electronic)9781614998297
StatePublished - 2017
Event16th World Congress of Medical and Health Informatics: Precision Healthcare through Informatics, MedInfo 2017 - Hangzhou, China
Duration: Aug 21 2017Aug 25 2017

Publication series

NameStudies in Health Technology and Informatics
ISSN (Print)0926-9630
ISSN (Electronic)1879-8365


Other16th World Congress of Medical and Health Informatics: Precision Healthcare through Informatics, MedInfo 2017


  • Electronic health records
  • Metadata
  • Patient outcome assessment

ASJC Scopus subject areas

  • Health Information Management
  • Health Informatics
  • Biomedical Engineering


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