Clinical data for paediatric research: the Swiss approach

Michael A. Grotzer ,Alain Gervaix,Ben D. Spycher,Milenko Rakic,Klara M. Posfay‐Barbe ,Daniela Kaiser,Paolo Paioni,Giacomo D. Simonetti ,Thomas J. Neuhaus,Gian Paolo Ramelli,Philipp do Canto,Ulrich Heininger,Manon Jaboyedoff,Umberto Siméoni ,Sara Bachmann,Amalia Stefani Gluecksberg,Manuel Diezi,Christian Kahlert ,Christoph Berger,Christiane Sokollik,Oliver Fuchs,Urs Frey,Matthias Kopp ,Christopher B. Forrest,Roger Lauener,Claudia E. Kuehni

doi:10.1186/s12919-021-00226-3

Abstract

Background and purposeContinuous improvement of health and healthcare system is hampered by inefficient processes of generating new evidence, particularly in the case of rare diseases and paediatrics. Currently, most evidence is generated through specific research projects, which typically require extra encounters with patients, are costly and entail long delays between the recognition of specific needs in healthcare and the generation of necessary evidence to address those needs. The Swiss Personalised Health Network (SPHN) aims to improve the use of data obtained during routine healthcare encounters by harmonizing data across Switzerland and facilitating accessibility for research. The project “Harmonising the collection of health-related data and biospecimens in paediatric hospitals throughout Switzerland (SwissPedData)” was an infrastructure development project funded by the SPHN, which aimed to identify and describe available data on child health in Switzerland and to agree on a standardised core dataset for electronic health records across all paediatric teaching hospitals. Here, we describe the results of a two-day symposium that aimed to summarise what had been achieved in the SwissPedData project, to put it in an international context, and to discuss the next steps for a sustainable future. The target audience included clinicians and researchers who produce and use health-related data on children in Switzerland.Key highlightsThe symposium consisted of state-of-the-art lectures from national and international keynote speakers, workshops and plenary discussions. This manuscript summarises the talks and discussions in four sections: (I) a description of the Swiss Personalized Health Network and the results of the SwissPedData project; (II) examples of similar initiatives from other countries; (III) an overview of existing health-related datasets and projects in Switzerland; and (IV) a summary of the lessons learned and future prospective from workshops and plenary discussions.ImplicationsStreamlined processes linking initial collection of information during routine healthcare encounters, standardised recording of this information in electronic health records and fast accessibility for research are essential to accelerate research in child health and make it affordable. Ongoing projects prove that this is feasible in Switzerland and elsewhere. International collaboration is vital to success. The next steps include the implementation of the SwissPedData core dataset in the clinical information systems of Swiss hospitals, the use of this data to address priority research questions, and the acquisition of sustainable funding to support a slim central infrastructure and local support in each hospital. This will lay the foundation for a national paediatric learning health system in Switzerland.

Highlights

Continuous improvements in patient care are hampered by slow and inefficient processes of generating evidence [1]
The program included state-of-the-art lectures by national and international keynote speakers, workshops and plenary discussions. This manuscript is structured into four section where we a) summarise presentations and discussions relating to the Swiss Personalized Health Network (SPHN) and the SwissPedData project, b) we provide examples of parallel initiatives from other countries and c) specific existing health-relevant datasets in Switzerland d) and we summarise the lessons learned and e) discussions on future opportunities from workshops and plenary discussions
Vital status is updated through a combination of passive and active follow-up and record linkage with the mortality records The ChCR forms the basis of the Swiss Childhood Cancer Survivor Study (SCCSS), which collects long-term follow-up information from 5-year survivors through questionnaires and allows investigating a wide range of somatic and psychosocial outcomes including second primary malignancies and late effect of cancer treatments, educational achievement, and health-related quality of life [53]

Summary

Introduction

Continuous improvements in patient care are hampered by slow and inefficient processes of generating evidence [1]. Its three work packages (WP) aimed, 1) to create an inventory of resources and ongoing research with routine data on child health in Switzerland; 2) to develop a national standardized dataset for children visiting paediatric hospitals; and 3) to evaluate whether parents would be willing to actively contribute information on their child’s health to SwissPedData (Fig. 2).

Results

Conclusion