Evidence map›Paper›PMID 34538238›Full record

ArticleBMC proceedings2021

Clinical data for paediatric research: the Swiss approach : Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019.

Milenko Rakic, Manon Jaboyedoff, Sara Bachmann, Christoph Berger, Manuel Diezi, Philipp do Canto, Christopher B Forrest, Urs Frey, Oliver Fuchs, Alain Gervaix and 16 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC proceedings, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Milenko Rakic *Institute of Social and Preventive Medicine (ISPM), University of Bern, Mittelstrasse 43, 3012, Bern, Switzerland.
Manon Jaboyedoff *Institute of Social and Preventive Medicine (ISPM), University of Bern, Mittelstrasse 43, 3012, Bern, Switzerland.
Sara BachmannUniversity of Basel Children's Hospital Basel (UKBB), University of Basel, Basel, Switzerland.
Christoph BergerUniversity Children's Hospital Zurich, University of Zurich, Zurich, Switzerland.
Manuel DieziService of Pediatrics, Department Women-Mother-Child, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
Philipp do CantoPublic Sector Law, Zurich, Switzerland.
Christopher B ForrestChildren's Hospital of Philadelphia, Philadelphia, PA, USA.
Urs FreyUniversity of Basel Children's Hospital Basel (UKBB), University of Basel, Basel, Switzerland.
Oliver FuchsDepartment of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Alain GervaixDepartment of Woman, Child and Adolescent, Children's Hospital, Geneva University Hospitals and Faculty of Medicine, Geneva, Switzerland.
Amalia Stefani GluecksbergPaediatric Department of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland and Università della Svizzera Italiana, Lugano, Switzerland.
Michael GrotzerUniversity Children's Hospital Zurich, University of Zurich, Zurich, Switzerland.
Ulrich HeiningerUniversity of Basel Children's Hospital Basel (UKBB), University of Basel, Basel, Switzerland.
Christian R KahlertChildren's Hospital of Eastern Switzerland, St. Gallen, Switzerland.
Daniela KaiserChildren's Hospital of Lucerne, Cantonal Hospital Lucerne, Lucerne, Switzerland.
Matthias V KoppDepartment of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Roger LauenerChildren's Hospital of Eastern Switzerland, St. Gallen, Switzerland.
Thomas J NeuhausChildren's Hospital of Lucerne, Cantonal Hospital Lucerne, Lucerne, Switzerland.
Paolo PaioniUniversity Children's Hospital Zurich, University of Zurich, Zurich, Switzerland.
Klara Posfay-BarbeDepartment of Woman, Child and Adolescent, Children's Hospital, Geneva University Hospitals and Faculty of Medicine, Geneva, Switzerland.
Gian Paolo RamelliPaediatric Department of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland and Università della Svizzera Italiana, Lugano, Switzerland.
Umberto SimeoniService of Pediatrics, Department Women-Mother-Child, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
Giacomo SimonettiPaediatric Department of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland and Università della Svizzera Italiana, Lugano, Switzerland.
Christiane SokollikDepartment of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Ben D Spycher *Institute of Social and Preventive Medicine (ISPM), University of Bern, Mittelstrasse 43, 3012, Bern, Switzerland.
Claudia E Kuehni *Institute of Social and Preventive Medicine (ISPM), University of Bern, Mittelstrasse 43, 3012, Bern, Switzerland. claudia.kuehni@ispm.unibe.ch.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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 HIGHLIGHTS: The 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. IMPLICATIONS: Streamlined 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.

Indexed as

Conference proceedingsElectronic health recordLearning health systemPaediatric researchTerminology harmonization

Identifiers

PMID34538238
PMCPMC8450032

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.