Paediatric Personalized Research Network Switzerland (SwissPedHealth): A Joint Paediatric National Data Stream
Authors: Mozun Rebeca , Belle Fabiën N. , Agostini Andrea , Baumgartner Matthias R. , Fellay Jacques , Forrest Christopher B. , Froese D. Sean , Giannoni Eric , Goetze Sandra , Hofmann Katrin , Latzin Philipp , Lauener Roger , Martin Necker Aurélie , Ormond Kelly E. , Pachlopnik Schmid Jana , Pedrioli Patrick G. A. , Posfay-Barbe Klara M. , Rauch Anita , Schulzke Sven , Stocker Martin , Spycher Ben D. , Vayena Effy , Welzel Tatjana , Zamboni Nicola , Vogt Julia E. , Schlapbach Luregn J. , Bielicki Julia A. , Kuehni Claudia E. ,   SwissPedHealth consortium
Published: July 2024

ABSTRACTIntroductionChildren represent a large and vulnerable patient group. However, the evidence-base for most paediatric diagnostic and therapeutic procedures remains limited or is often inferred from adults. There is urgency to improve paediatric health care provision based on real-world evidence generation. The digital transformation is a unique opportunity to shape a data-driven, agile, learning health care system and deliver more efficient and personalized care to children and their families. The goal of SwissPedHealth is to build a sustainable and scalable infrastructure to make routine clinical data from paediatric hospitals in Switzerland interoperable, standardized, quality-controlled, and ready for observational research, quality assurance, trials, and health-policy creation. This paper describes the design, aims, and current achievements of SwissPedHealth.Methods and analysisSwissPedHealth started in September 2022 as one of four National Data Streams co-funded by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT). SwissPedHealth develops modular governance and regulatory strategies, and harnesses SPHN automatization procedures, in collaboration with clinical data warehouses, the Data Coordination Center, Biomedical Information Technology Network, and other SPHN institutions and funded projects. The SwissPedHealth consortium is led by a multi-site, multi-disciplinary Steering Committee incorporating patient and family representatives. The data stream contains work packages focusing on: 1) governance and implementation of standardized data collection, 2) nested projects to test the feasibility of the data stream, 3) a lighthouse project that enriches the data stream by integrating multi-omics data, aiming to improve diagnoses of rare diseases, and 4) engagement with families through patient and public involvement activities and bioethics interviews.Ethics and disseminationThe health database regulation of SwissPedHealth was approved by the ethics committee (AO_2022-00018). Research findings will be disseminated through national and international conferences, publications in peer-reviewed journals and in lay language via online media and podcasts.ARTICLE SUMMARY⍰ The paediatric national data stream SwissPedHealth focuses on routine clinical data from children at Swiss University Children’s Hospitals, spans disciplines and is built in a scalable and modular way in terms of governance, data infrastructure, and patient and public involvement, to enable a gradual increase in coverage of the Swiss child population.⍰ SwissPedHealth strives to increase readiness for quality improvement, research, and personalized paediatric health care.⍰ SwissPedHealth’s infrastructure aligns with the national frameworks, safeguarding data security and adhering to a standard interoperability framework based on the Resource Description Framework (RDF).⍰ SwissPedHealth seeks to explore integration of data from external sources such as federal statistics, cohorts, and registries, which have their own governance and data formats.• SwissPedHealth investigates the use of multi-omics workflows to improve diagnosis of rare diseases in children with life-threatening phenotypes