eNewborn: The Information Technology Revolution and Challenges for Neonatal Networks

Abstract

Among preterm infants, 1-2% are born before 32 weeks of gestation or have a birth weight below 1,500 g. They contribute disproportionately to the burden of mortality and morbidity related to preterm birth, whether in the neonatal period or later in life. They are the target population studied in neonatal networks. Improving neonatal care and later outcome is a major issue in public health. Neonatologists, health care providers, public authorities, parents and families, industry, and all organizations dedicated to infant health must bring their efforts together and dedicate their actions in order to do so. Neonatal networks are the strongest platforms through which to achieve this goal. The progressive information technology (IT) revolution is leading to a new approach. The power of search engines and new technological devices opens extraordinary new perspectives in terms of speed, storing, sharing, and innovative approaches in providing health care. However, difficulties are expected with old applications that cannot evolve in the new IT environment. Security and privacy in data collection are future challenges to be addressed. Here, we describe the eNewborn project and its original software. The main functionalities are interactive navigation, harmonization with other formats, linkage with other databases, and strict security and privacy procedures.

Frameworks for Evaluating Medicines in Children

“…Data sharing requires technical and semantic interoperability, which is under development in pediatrics. [45][46][47] For pediatric research in particular, an international cooperative effort to develop a concept and terminology resource is readily and freely available. 48…”

An overview of the Swiss Neonatal Network & Follow-up Group (SwissNeoNet)

“…SwissNeoNet's aim in collaborating was to benchmark within geographical proximity and to help build a neonatal research community within Europe. After Prof. Valls-i-Soler's sudden and sad demise, Dominique Haumont from Brussels took over the initiative for a combined European neonatal network named eNewborn at which SwissNeoNet was one of the founding members (23). Thanks to eNewborn, Swiss NICUs were able to perform online benchmarking with NICUs from Belgium, Czech Republic, Portugal, and the United Kingdom, who submitted data extracted from an in-country database.…”

Information technology infrastructure, quality improvement and research: the UK National Neonatal Research Database

“…The International Network for Evaluation of Outcomes of Neonates (iNeo) is a quality improvement project based on collaborative comparisons of population-based international healthcare for neonates led by the University of Toronto (http://ineonetwork.org) (28) that has produced a number of outputs (29)(30)(31)(32)(33)(34)(35)(36)(37)(38). eNewborn is a pan-European preterm benchmarking platform (39).…”