Abstract
Background and Aims
A framework to safely share clinical data from European Pediatric and Neonatal Intensive Care Units (PICU, NICU) will enhance research, improve clinical benchmarking and promote quality improvement projects among participating centres. When applying advanced data science methods such as machine learning to heterogenous patient data, substantial amounts of patient data from different centres may be needed to produce and validate reliable models.
The aim of this research is to summarize conditions and requirements which such a framework must meet in order to take the first steps towards a European NICU and PICU clinical data framework.
Methods
A survey was conducted among the members of the ESPNIC Data Science Working Group to investigate the use of electronic medical records (EMR) among European NICU’s and PICU’s and to identify European experts in NICU and PICU data registries and data science. During three meetings, these experts defined a list of topics regarding the framework conditions and requirements.
Results
The use of EMR ranged from approximately 20% in Germany to 100% in The Netherlands (Figure 1). Fourteen European experts in data registries and data science were identified. They reached consensus on the requirements for a European NICU and PICU data framework, which included data availability, data standardization, legislation and privacy, funding and framework architecture.
Conclusions
Several requirements for a European NICU and PICU clinical data sharing framework were identified, including data availability. The variable use of EMR among European centres may detain development of such a framework.
A framework to safely share clinical data from European Pediatric and Neonatal Intensive Care Units (PICU, NICU) will enhance research, improve clinical benchmarking and promote quality improvement projects among participating centres. When applying advanced data science methods such as machine learning to heterogenous patient data, substantial amounts of patient data from different centres may be needed to produce and validate reliable models.
The aim of this research is to summarize conditions and requirements which such a framework must meet in order to take the first steps towards a European NICU and PICU clinical data framework.
Methods
A survey was conducted among the members of the ESPNIC Data Science Working Group to investigate the use of electronic medical records (EMR) among European NICU’s and PICU’s and to identify European experts in NICU and PICU data registries and data science. During three meetings, these experts defined a list of topics regarding the framework conditions and requirements.
Results
The use of EMR ranged from approximately 20% in Germany to 100% in The Netherlands (Figure 1). Fourteen European experts in data registries and data science were identified. They reached consensus on the requirements for a European NICU and PICU data framework, which included data availability, data standardization, legislation and privacy, funding and framework architecture.
Conclusions
Several requirements for a European NICU and PICU clinical data sharing framework were identified, including data availability. The variable use of EMR among European centres may detain development of such a framework.
| Original language | English |
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| Publication status | Published - 15 Jun 2021 |
| Event | The European Society of Paediatric and Neonatal Intensive Care Congress: An Online Xperience - Duration: 15 Jun 2021 → 18 Jun 2021 https://espnic2021.kenes.com/scientific-programme/ |
Conference
| Conference | The European Society of Paediatric and Neonatal Intensive Care Congress |
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| Abbreviated title | ESPNIC 2021 |
| Period | 15/06/21 → 18/06/21 |
| Internet address |