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

Abstract

: The Swiss Neonatal Network & Follow-up Group (SwissNeoNet) started as a paper based standardized data collection for very preterm born infants in 1995 for the purpose of research. It has since evolved into a sophisticated online medical registry with the chief aim of improving the quality of medical care for high-risk newborn infants through research, education and collaborative audit. In support of its aim, it collects primary hospitalization and neurodevelopmental follow-up data of various cohorts of newborns from all level III neonatal intensive care units (NICUs) and all peripheral intermediate care level IIB neonatal units (NUs) in Switzerland. It coordinates clinical, epidemiological and health-services research that provide orientation for Swiss neonatologists on how their performance compares with that of other networks, how different approaches in practices without clear evidence base associate with outcome, or how processes and outcomes evolve longitudinally. Its research also allowed former very preterm born children to express their own perception of their quality of life. SwissNeoNet closely monitors and compares NICUs and NUs and provides the infrastructure for quality improvement collaboratives. All units jointly and openly compare their performance and identify potential for changing clinical practices which has led to several local improvement projects as well as revisions of national treatment recommendations. To collaborate in research, to acquire benchmarks, and to serve as a benchmark, SwissNeoNet is actively engaged in several national and international collaborations. Receiving no governmental support, SwissNeoNet struggles with a limited budget to continuously operate a multifaceted, complex network with an electronically advanced, security sensitive infrastructure. Nevertheless, it plans expanding by connecting closer to the families and ultimately the former very preterm born children in the near future: building a patient reported outcome measure (PROM) repository and thus learning more about the parental/patient perspective will benefit clinical research, qualitative research, quality assessment, long-term follow-up recruitment and may even pave the way to later expand into citizen science and personalized health care.