A global federated real-world data and analytics platform for research

• Published in: JAMIA open 2023-07, Vol.6 (2), p.ooad035-ooad035
• Main Authors: Palchuk, Matvey B, London, Jack W, Perez-Rey, David, Drebert, Zuzanna J, Winer-Jones, Jessamine P, Thompson, Courtney N, Esposito, John, Claerhout, Brecht
• Format: Article
• Language: English
• Subjects: Computational linguistics; Electronic records; Language processing; Medical records; Medical research; Medicine, Experimental; Natural language interfaces; Nonprofit organizations; Research and Applications
• ISSN: 2574-2531; 2574-2531
• DOI: 10.1093/jamiaopen/ooad035

Abstract Objective This article describes a scalable, performant, sustainable global network of electronic health record data for biomedical and clinical research. Materials and Methods TriNetX has created a technology platform characterized by a conservative security and governance model that facilitates collaboration and cooperation between industry participants, such as pharmaceutical companies and contract research organizations, and academic and community-based healthcare organizations (HCOs). HCOs participate on the network in return for access to a suite of analytics capabilities, large networks of de-identified data, and more sponsored trial opportunities. Industry participants provide the financial resources to support, expand, and improve the technology platform in return for access to network data, which provides increased efficiencies in clinical trial design and deployment. Results TriNetX is a growing global network, expanding from 55 HCOs and 7 countries in 2017 to over 220 HCOs and 30 countries in 2022. Over 19 000 sponsored clinical trial opportunities have been initiated through the TriNetX network. There have been over 350 peer-reviewed scientific publications based on the network’s data. Conclusions The continued growth of the TriNetX network and its yield of clinical trial collaborations and published studies indicates that this academic-industry structure is a safe, proven, sustainable path for building and maintaining research-centric data networks. Lay Summary This article describes a network—a series of interconnected data repositories—where clinical data about patients is stored after being extracted from electronic health record systems. The data on this network are meant to be used by researchers working in healthcare institutions as well as the life sciences industry. This network aims to make it easier, faster, and cheaper to find patients for recruitment into clinical trials and to conduct research using the clinical data. This network is being developed and maintained by a commercial company TriNetX, LLC. It is growing rapidly, expanding from 55 healthcare organizations and 7 countries in 2017 to over 220 healthcare organizations and 30 countries in 2022. The privacy and security of patient as well as member organizations’ data are of paramount concern. TriNetX takes a very conservative stand with respect to privacy protection and data governance. The data on this network have been used extensively for research and there’s c