SwissPedData: Standardising hospital records for the benefit of paediatric research
Authors: Jaboyedoff Manon , Rakic Milenko , Bachmann Sara , Berger Christoph , Diezi Manuel , Fuchs Oliver , Frey Urs , Gervaix Alain , Glücksberg Amalia Stefani , Grotzer Michael , Heininger Ulrich , Kahlert Christian R. , Kaiser Daniela , Kopp Matthias V. , Lauener Roger , Neuhaus Thomas J.  , Paioni Paolo , Posfay-Barbe Klara , Ramelli Gian Paolo , Simeoni Umberto , Simonetti Giacomo , Sokollik Christiane , Spycher Ben D. , Kuehni Claudia E.  
Published: January 2022

BACKGROUND:
Improvement of paediatric healthcare is hampered by inefficient processes for generating new evidence. Clinical research often requires extra encounters with
patients, is costly, takes place in an artificial situation with a biased selection of
patients, and entails long delays until new evidence is implemented into health care.
Electronic health records (EHR) contain detailed information on real patients and cover
the entirety of patients. However, the use of EHR for research is limited because they
are not standardised between hospitals. This leads to disproportionate amounts of
work for extracting data of interest and frequently data are incomplete and of poor
quality.

AIMS:
SwissPedData aims to lay the foundation for a paediatric learning health system in
Switzerland by facilitating EHR-based research. In this project, we aimed to assess the
way routine clinical data are currently recorded in large paediatric clinics in Switzerland
and to develop a national EHR-based set of common data elements (CDEs) that
covers all processes of routine paediatric care in hospitals.

METHODS:
A taskforce of paediatricians from large Swiss children’s hospitals reviewed the current
status of routine data documentation in paediatric clinical care and the extent of
digitalisation. We then used a modified Delphi method to reach a broad consensus on
a national EHR-based set of CDEs.
RESULTS:
All Swiss children’s hospitals use EHR to document some or all aspects of care. One hundred and nineteen paediatricians, representing eight hospitals and all paediatric subspecialties,
participated in an extended Delphi process to create SwissPedData. The group agreed
on a national set of CDEs that comprises a main module with general paediatric data
and sub-modules relevant to paediatric subspecialties. The data dictionary includes
336 CDEs: 76 in the main module on general paediatrics and
between 11 and 59 CDEs per subspecialty module. Among these, 266 were classified
as mandatory, 52 as recommended and 18 as optional.

CONCLUSION:
SwissPedData is a set of CDEs for information to be collected in EHR of Swiss
children’s hospitals. It covers all care processes including clinical and paraclinical
assessment, diagnosis, treatment, disposition and care site. All participating hospitals
agreed to implement SwissPedData in their clinical routine and clinic information
systems. This will pave the way for a national paediatric learning health system in
Switzerland that enables fast and efficient answers to urgent clinical questions by
facilitating high-quality nationwide retrospective and prospective observational studies
and recruitment of patients for nested prospective studies and clinical trials.