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Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019
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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8450032/ https://www.ncbi.nlm.nih.gov/pubmed/34538238 http://dx.doi.org/10.1186/s12919-021-00226-3 |
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author | Rakic, Milenko Jaboyedoff, Manon Bachmann, Sara Berger, Christoph Diezi, Manuel do Canto, Philipp Forrest, Christopher B. Frey, Urs Fuchs, Oliver Gervaix, Alain Gluecksberg, 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. |
author_facet | Rakic, Milenko Jaboyedoff, Manon Bachmann, Sara Berger, Christoph Diezi, Manuel do Canto, Philipp Forrest, Christopher B. Frey, Urs Fuchs, Oliver Gervaix, Alain Gluecksberg, 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. |
author_sort | Rakic, Milenko |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8450032 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-84500322021-09-20 Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 Rakic, Milenko Jaboyedoff, Manon Bachmann, Sara Berger, Christoph Diezi, Manuel do Canto, Philipp Forrest, Christopher B. Frey, Urs Fuchs, Oliver Gervaix, Alain Gluecksberg, 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. BMC Proc Meeting Report 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. BioMed Central 2021-09-20 /pmc/articles/PMC8450032/ /pubmed/34538238 http://dx.doi.org/10.1186/s12919-021-00226-3 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Meeting Report Rakic, Milenko Jaboyedoff, Manon Bachmann, Sara Berger, Christoph Diezi, Manuel do Canto, Philipp Forrest, Christopher B. Frey, Urs Fuchs, Oliver Gervaix, Alain Gluecksberg, 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. Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title | Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title_full | Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title_fullStr | Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title_full_unstemmed | Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title_short | Clinical data for paediatric research: the Swiss approach: Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019 |
title_sort | clinical data for paediatric research: the swiss approach: proceedings of the national symposium in bern, switzerland, dec 5-6, 2019 |
topic | Meeting Report |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8450032/ https://www.ncbi.nlm.nih.gov/pubmed/34538238 http://dx.doi.org/10.1186/s12919-021-00226-3 |
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