International network for evaluating outcomes of neonates: outputs and future directions

Ten neonatal networks from 11 countries—Australia, New Zealand, Canada, Finland, Israel, Japan, Spain, Sweden, Switzerland, the Tuscany region of Italy, and the UK—came together in 2012 to form the International Network for Evaluating Outcomes of Neonates (iNeo): an international collaboration of population-representative, national neonatal datasets. The result has been a powerful platform for epidemiological, outcomes-based, and applied health services and policy research. The network has successfully collaborated to evaluate variations in health service organization, practices, and outcomes, with an aim to harmonize processes and identify areas for quality improvement in the various countries. We have identified marked variations in outcomes such as mortality, severe neurological injury, and treated retinopathy of prematurity; and highlighted the important need for the neonatal community to harmonize criteria for diagnosing bronchopulmonary dysplasia. Despite marked changes in the respiratory management of extremely preterm neonates with the aim to avoid mechanical ventilation, judicious use of oxygen, and less invasive administration of surfactant, rates of bronchopulmonary dysplasia have continued to rise in most countries. This may be due to marked discrepancies in the diagnostic criteria for bronchopulmonary dysplasia in extremely preterm neonates. We were able to conduct a detailed survey of more than 300 neonatal units worldwide and link the responses with actual patient data to generate hypotheses to evaluate 23 † Names and affiliations of the iNeo investigators are provided in the Acknowledgments. Pediatric Medicine, 2021 Page 2 of 23 © Pediatric Medicine. All rights reserved. Pediatr Med 2021 | https://dx.doi.org/10.21037/pm-21-73 Background information Ten neonatal networks from 11 countries—Australia, New Zealand, Canada, Finland, Israel, Japan, Spain, Sweden, Switzerland, the Tuscany region of Italy, and the UK—came together in 2012 to form the International Network for Evaluating Outcomes of Neonates (iNeo): an international collaboration of population-representative, national neonatal datasets. The result is a powerful platform for epidemiological, outcomes-based, and applied health services and policy research. Our underlying goal in building this collaboration was to improve patient-oriented outcomes for neonates born very preterm (VPT, born before 32 weeks’ gestational age) and extremely preterm (EPT, born before 28 weeks’ gestation) around the world. As outlined by others in this article series, most of the networks involved in iNeo have well-established platforms for their own internal evaluation, benchmarking, and quality improvement activities. They also participate in many benchmarking activities both nationally and internationally. Since inception, iNeo has produced several high-quality outputs in the domains of outcomes evaluation, evaluation of care and practice similarities and differences between the networks, epidemiological studies, and health services evaluation. In this article we will review the salient features of these outputs and identify opportunities for the next phase in this influential international collaboration. Overarching network aims As detailed in the following sections, the iNeo collaboration has made steady progress towards achieving many of its initial aims (1): These aims were to compare neonatal outcomes and health service organization for VPT neonates at the national level; to identify differences in site-level physical, human, and environmental characteristics, as well as care practices, that underlie the outcome variations; to identify clinical and organizational practice improvements relevant to each network; to implement and continually evaluate the impact of data-informed and evidence-linked clinical and organizational practice changes in neonatal intensive care units (NICUs) within participating networks; and to train and mentor junior researchers in the conduct of neonatal-perinatal health services research. Network structure and organization The iNeo collaboration was established in 2013 with funds from the Canadian Institutes of Health Research’s Institute of Human Development, Child and Youth Health (2). Its purpose is to collect phenotypic information on newborns admitted to neonatal units in the participating countries, along with some maternal details, at the time of birth. As this information is already collected in local datasets, the purpose of iNeo is to first harmonize and then collectively assemble a larger pool of individual patient data from the original, population-based networks or datasets. Harmonization efforts like these have even stimulated interest and opportunities in country like China, which recently reported their first cohort data from 68 neonatal units (3-5). The underlying principles of the iNeo collaboration were to study variations in the outcomes, characteristics, practices, and cultures of the member sites; evaluate the impact of such variations on neonatal outcomes; and identify and learn from different models of health service delivery (incorporating medical and nonmedical variations). The results have been published and advertised by respective network to their constituents to in future studies. Specific areas of investigation have included preventing necrotizing enterocolitis, managing patent ductus arteriosus, and managing neonates with critical events such as severe intraventricular hemorrhage. In addition, we studied the physical design of neonatal units from family-centered care delivery point of view and multidisciplinary team inclusion in care of neonates. In this review, we summarize our opportunities for improvement and future plans for the collaboration. We also highlight the challenges we face as an international collaboration, such as sustainability and funding.