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

被引：1

作者：

Rakic M. ^{[1
]}

Jaboyedoff M. ^{[1
,2
]}

Bachmann S. ^{[3
]}

Berger C. ^{[4
]}

Diezi M. ^{[2
]}

do Canto P. ^{[5
]}

Forrest C.B. ^{[6
]}

Frey U. ^{[3
]}

Fuchs O. ^{[7
]}

Gervaix A. ^{[8
]}

Gluecksberg A.S. ^{[9
]}

Grotzer M. ^{[4
]}

Heininger U. ^{[3
]}

Kahlert C.R. ^{[10
]}

Kaiser D. ^{[11
]}

Kopp M.V. ^{[7
]}

Lauener R. ^{[10
]}

Neuhaus T.J. ^{[11
]}

Paioni P. ^{[4
]}

Posfay-Barbe K. ^{[8
]}

Ramelli G.P. ^{[9
]}

Simeoni U. ^{[2
]}

Simonetti G. ^{[9
]}

Sokollik C. ^{[7
]}

Spycher B.D. ^{[1
]}

Kuehni C.E. ^{[1
]}

机构：

[1] Institute of Social and Preventive Medicine (ISPM), University of Bern, Mittelstrasse 43, Bern

[2] Service of Pediatrics, Department Women-Mother-Child, Lausanne University Hospital and University of Lausanne, Lausanne

[3] University of Basel Children’s Hospital Basel (UKBB), University of Basel, Basel

[4] University Children’s Hospital Zurich, University of Zurich, Zurich

[5] Public Sector Law, Zurich

[6] Children’s Hospital of Philadelphia, Philadelphia, PA

[7] Department of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Bern

[8] Department of Woman, Child and Adolescent, Children’s Hospital, Geneva University Hospitals and Faculty of Medicine, Geneva

[9] Paediatric Department of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland and Università della Svizzera Italiana, Lugano

[10] Children’s Hospital of Eastern Switzerland, St. Gallen

[11] Children’s Hospital of Lucerne, Cantonal Hospital Lucerne, Lucerne

来源：

BMC Proceedings | / 15卷 / Suppl 13期

关键词：

Conference proceedings; Electronic health record; Learning health system; Paediatric research; Terminology harmonization;

D O I：

10.1186/s12919-021-00226-3

中图分类号：

学科分类号：

摘要：

Background and purpose: Continuous 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. © 2021, The Author(s).

引用

共 46 条

[1]

Morris Z.S., Wooding S., Grant J., The answer is 17 years, what is the question: understanding time lags in translational research, J R Soc Med, 104, 12, pp. 510-520, (2011)

[2]

Deans K.J., Sabihi S., Forrest C.B., Learning health systems, Semin Pediatr Surg, 27, 6, pp. 375-378, (2018)

[3]

Cimino J.J., Collect once, use many. Enabling the reuse of clinical data through controlled terminologies, J Ahima, 78, 2, pp. 24-29, (2007)

[4]

Kush R., Alschuler L., Ruggeri R., Cassells S., Gupta N., Bain L., Claise K., Shah M., Nahm M., Implementing single source: the STARBRITE proof-of-concept study, J Am Med Inform Assoc, 14, 5, pp. 662-673, (2007)

[5]

Breil B., Semjonow A., Muller-Tidow C., Fritz F., Dugas M., HIS-based Kaplan-Meier plots - a single source approach for documenting and reusing routine survival information, BMC Med Informa Decis Making, 11, 1, (2011)

[6]

Seid M., Margolis P.A., Opipari-Arrigan L., Engagement, peer production, and the learning healthcare system, JAMA Pediatr, 168, 3, pp. 201-202, (2014)

[7]

National Academy of Sciences, (2007)

[8]

Jaboyedoff M., Et al., Swisspeddata, (2021)

[9]

Kern S.E., Challenges in conducting clinical trials in children: approaches for improving performance, Expert Rev Clin Pharmacol, 2, 6, pp. 609-617, (2009)

[10]

The Lancet, D. And Endocrinology, Spotlight on rare diseases. The Lancet Diabetes & Endocrinology, 7, 2, (2019)

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