Understanding Data Differences across the ENACT Federated Research Network.

Abstract

Objective: Federated research networks, like Evolve to Next-Gen Accrual of patients to Clinical Trials (ENACT), aim to facilitate medical research by exchanging electronic health record (EHR) data. However, poor data quality can hinder this goal. While networks typically set guidelines and standards to address this problem, we developed an organically evolving, data-centric method using patient counts to identify data quality issues, applicable even to sites not yet in the network.

Materials and methods: We distribute high-performance patient counting scripts as part of Integrating Biology at the Bedside (i2b2), which all ENACT sites operate. They produce counts of patients associated with ENACT ontology terms for each site. At the ENACT Hub, our pipeline aggregates site-contributed counts to produce network statistics, which our self-service web application, Data Quality Explorer (DQE), ingests to help sites conduct data quality investigation relative to the network.

Results: Thirteen ENACT sites have contributed their patient counts, and currently seven sites have signed up to use DQE to analyze data quality issues. We announced a call to all ENACT sites to contribute additional patient counts.

Discussion: Identifying site data quality problems relative to the network is novel. Using a metric based on evolving network statistics complements rigid data quality checks. It is adaptable to any network and has low barriers of entry, with patient counting being the sole requirement.

Conclusion: We implemented a metric for conducting data quality investigation in ENACT using patient counting and network statistics. Our end-to-end pipeline is privacy-preserving and the underlying design is generalizable.