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About this group

In January 2021, аÄÃÅÁùºÏ²Ê¿ª½±Íø convened a Data and Informatics Steering Group in response to the increasing complexity surrounding neonatal data arising from varying quality measures and diagnostic definitions, and multiple electronic patient record systems.

The group aims to champion and support perinatal professionals with the use of neonatal data to improve neonatal care and services. 

The remit of the group includes:

• Advocacy for the collection and use of accurate data to benefit patient care and neonatal services
• Development of shared resources to support perinatal professionals to maximise the utility of data to benefit patient care
• Promotion of a nationally standardised approach to quality measure definitions and interoperability of EPR systems, reducing the burden of data entry for clinical staff
• Facilitation of collaborative engagement between stakeholders to streamline data collection, curation and analysis for common purposes

Key Priorities 2024-2027

1. Maintaining and improving current facilitation of use of neonatal data

• Maximising completeness and accuracy
• Improving data quality
• Enabling NHS use of neonatal data
• Achieving clinical improvement

2. Delivery of long term stability for neonatal data flow

• Vendor neutral data hosting solution allowing NHS/ audits/ research/ other access to data

3. Collaboration with maternity data flows to facilitate better perinatal measurement

• Supporting improved utility of, and use of, maternity data
• Linkage between maternity and neonatal data
• Facilitation of direct maternity data flow into neonatal data systems

Principles

• Single point of data entry/ multiple uses of data
• Proportionate, accountable, approach to data governance
• Minimising barriers to data access – proportionate costings etc
• Standardised data definitions and dataset
• Accountable approach
• FAIR - Findability, Accessibility, Inter-operability, Reproducibility
• Equity and equality.