Neonatal medicine

High quality data drives advances in infant healthcare

Quick fact

Approximately 700,000 babies are born each year in England and Wales and of these nearly 1 in 8, or more than 86,000, will be admitted to a Neonatal Unit

Key Imperial researchers

Professor Neena Modi and her team at Imperial College have used a novel and innovative approach to address the lack of high quality data to advance healthcare for sick newborn babies. This was affecting the care of about 80,000 infants each year. The lack of such high quality data prevents the efficient commissioning, service planning, audit, evaluation of health outcomes and quality improvement programmes.

In 2007, Imperial researchers established the Neonatal Data Analysis Unit and initiated a National Neonatal Research Database. This unique database contains extracts of around 450 predefined variables from the clinician-entered Electronic Patient Records of every baby admitted into a UK neonatal unit. These data, the Neonatal Data Set, form a new NHS Information Standard. By 2015, the researchers had secured the involvement of all neonatal units in England, Wales and Scotland. They have created a truly unique resource and to-date the National Neonatal Research Database contains data on over 600,000 infants and 6 million days of care.

Using the National Neonatal Research Database the researchers identified variation in resource utilisation and clinical outcomes in breast-feeding. They have identified a highly significant increase in screening for Retinopathy of Prematurity between 2009-2011. They demonstrated that following the reorganisation of neonatal services into networks, the proportion of very preterm babies born at high-volume neonatal units increased from 18% to 49%.

The National Neonatal Research Database is unique internationally being created from data extracted from Electronic Patient Records rather than de novo data collection. In addition, having complete national coverage of all admissions to neonatal units with no gestational age, birth weight, insurance cover, or other restrictions is unique internationally. The use of the National Neonatal Research Database is now widespread and includes analyses for NHS and Public Health England, professional organisations, Department of Health, European and international benchmarking, and research led by national and international investigators. This data drives improvements in the health care provision for newborn babies in the UK.

References

References

1) Shah PK, Lui K, Sjörs G, Mirea L, Reichman B, Modi N, Darlow BA, Kusuda S, Junmin Y, Håkansson S, Mori R, Bassler Dirk, Lee SK Neonatal outcomes of very low birth weight and very preterm neonates: an international comparison J Pediatr In press

2) Gale C, Modi N; WHEAT trial development group Neonatal randomised point-of-care trials are feasible and acceptable in the UK: results from two national surveys Arch Dis Child Fetal Neonatal Ed. 2016 Jan; 101(1):F86-7. Epub 2015 Oct 23 PMID: 26500239

3) Springett A, Mann JP, Statnikov E, Modi N, Johnson N, Morris JK Neonatal Unit outcomes for infants with Down syndrome Management and outcomes of neonates with Down syndrome admitted to neonatal units, Birth Defects Research Part A: Clinical and Molecular Teratology. In press

4) Watson SI, Arulampalam W, Petrou S, Marlow N, Morgan AS, Draper ES, Modi N The effects of a one to one nurse to patient ratio on the mortality rate in neonatal intensive care: A retrospective, longitudinal, population-based study Arch Dis Child Fetal Neonatal Ed 2016 Feb 9. [Epub ahead of print] PMID:26860480

5) Watson SI, Arulampalam W, Petrou S, Marlow N, Morgan AS, Draper ES, Santhakumaran S, Modi N, on behalf of the Neonatal Data Analysis Unit and the NESCOP Group, The effects of designation and volume of neonatal care on mortality and morbidity outcomes of very preterm infants in England: Retrospective, population-based, cohort study, BMJ Open 2014 Jul 7;4(7):e004856

6) Battersby C, Santhakumaran S, Upton M, Radbone L, Birch J, Modi Non behalf of the East of England Perinatal Networks, the UK Neonatal Collaborative and the Neonatal Data Analysis Unit Impact of a regional care bundle on maternal breast milk use in preterm infants: outcomes of the East of England Quality Improvement Programme Arch Dis Child Fetal Neonatal Ed 2014; 99(5):F395-401 PMID:24876197

7) Shah PS, Lee SK, Lui K, Sjörs G, Mori R, Reichman B, Håkansson S, Feliciano LS, Modi N, Adams M, Darlow B, Fujimura M, Kusuda S, Haslam R, Mirea L The International Network for Evaluating Outcomes of very low birth weight, very preterm neonates (iNeo): a protocol for collaborative comparisons of international health services for quality improvement in neonatal care BMC Pediatr 2014 Apr 23; 14(1):110. PMID:24758585

8) Murray J, Bottle A, Sharland M, Modi N, Aylin P, Majeed A, Saxena S; Medicines for Neonates Investigator Group. Risk Factors for Hospital Admission with RSV Bronchiolitis in England: A Population-Based Birth Cohort Study. PLoS One. 2014 Feb 26;9(2):e89186

9) Cole TJ, Statnikov Y, Santhakumaran S, Pan H, Modi N on behalf of the Neonatal Data Analysis Unit and the Preterm Growth Investigator Group Birth weight and longitudinal growth in infants below 32 weeks gestation: a UK population study Arch Dis Child Fetal Neonatal Ed 2014; 99:F34-40

10)  Wong HS, Santhakumaran S, Statnikov Y, Gray D, Watkinson M, Modi N, and the UK Neonatal Collaborative, Retinopathy of prematurity in English neonatal units: a national population-based analysis utilising NHS operational data. ADC-FNN 2014; 99(3):F196-202

11) Spencer A, Modi N National neonatal data to support specialist care and improve infant outcomes Arch Dis Child Fetal Neonatal Ed 2013; 98:F175-80

12) Blencowe H, Lee ACC, Cousens S, Bahalim A, Narwal R, Zhong N, Chou D, Say L, Modi N, Katz J, Vos T, Marlow N, Lawn JE Beyond newborn survival: Preterm birth associated impairment estimates at regional and global level for 2010. Pediatr Res 2013; 74: 17-34

13) Murray J, Saxena S, Modi N, Majeed A, Aylin P, Bottle A Quality of routine hospital birth records and the feasibility of their use for creating birth cohorts J Public Health (Oxf) 2013; 35:298-307

14) Foster V, Young A; Modi N, Brocklehurst P et al The use of routinely collected patient data for research: a critical review Health (London) 2012; 16:448-63

15) Gale C, Santhakumaran S, Nagarajan S, Statnikov Y, Modi N on behalf of the Neonatal Data Analysis Unit and the Medicines for Neonates Investigator Group The impact of introducing managed clinical networks on neonatal care in England: a population-based study BMJ 2012 Apr 3; 344:e2105

16) Royal College of Paediatrics and Child Health and the Neonatal Data Analysis Unit, Annual Reports 2008, 2009, 2010, 2011, 2012, 2013; 2014 (http://www.rcpch.ac.uk/improving-child-health/quality-improvement-and-clinical-audit/national-neonatal-audit-programme-nnap)

17) Atlas of Variation in Healthcare for Children and Young People, 2012, 2013, 2014 (http://www.chimat.org.uk/variation#cmoreport)