1. NIHR Southampton Biomedical Research Centre The Southampton Biomedical Research Centre is funded by the National Institute for Health Research (NIHR) and is a partnership between University Hospital Southampton NHS Foundation Trust and the University of Southampton What can data do to improve quality of care in the NNU? Dr Alison Leaf Academic Neonatologist NIHR Nutrition BRC Southampton Examples from Vermont Oxford and SPIN Study

2. NIHR Southampton Biomedical Research Centre Improvement…. im·prove (m-prv) v. im·proved, im·prov·ing, im·proves v.tr. 1. To raise to a more desirable or more excellent quality or condition; make better. 2. To increase the productivity or value of (land or property). 3. To put to good use; use profitably.

3. NIHR Southampton Biomedical Research Centre The Model for Improvement What are we trying to accomplish? How will we know that a change is an improvement? What changes can we make that will result in an improvement? Aim Measurement Cycle for Learning and Improvement PLAN DOSTUDY ACT Langley, Nolan, et.al. The Improvement Guide: A Practical Approach to Enhancing Organizational Performance. Jossey-Bass. Sa Francisco, CA. 1996.

4. NIHR Southampton Biomedical Research Centre Habit for Change Habit for Change Four key habits BETTER PRACTICES Clinical Organizational Operational Habit for Systems Thinking Habit for Evidence- Based Practice Habit for Collaborative Learning

5. NIHR Southampton Biomedical Research Centre If you want to IMPROVE… You need to MEASURE… So need accurate and robust DATA

6. NIHR Southampton Biomedical Research Centre VON - beginnings Started in 1991 by Dr Jerry Lucey Professor of Neonatal Medicine, Burlington, Vermont Editor of Pediatrics 50 neonatal units in USA Low Birth-weight database All units collect standardised data on babies <1500g (paper forms) Clear definitions in ‘Manual of Operations’ Data collected at 28 days and discharge Received quarterly and annual reports Developed to foster research (RCTs) and standardisation of care

7. NIHR Southampton Biomedical Research Centre VON - evolution Recognition of the wide variation in clinical practice and in outcomes –Interest in bench-marking 1999 - Development of NIC/Q collaborative –NICU quality improvement programme 2000 - Expanded database (electronic data) –Optional data collection on all NICU admissions 2003 – iNIC/Q –Internet based QI programme Steady increase in membership –International Participation

8. NIHR Southampton Biomedical Research Centre Variability in outcomes

9. NIHR Southampton Biomedical Research Centre Variability…. Is it due to case-mix?? –Risk adjusted data / standardised mortality ratios –Look at inborn/outborn separately –Look at outcomes by birthweight or gestational age group Is it due to chance -natural variability in rare outcomes?? –Summarised data over three years Is it due to differences in clinical management??

10. NIHR Southampton Biomedical Research Centre Addressing case-mix

11. NIHR Southampton Biomedical Research Centre Addressing natural variation

12. NIHR Southampton Biomedical Research Centre Habit for Change Habit for Change Addressing Clinical Practice BETTER PRACTICES Clinical Organizational Operational Habit for Systems Thinking Habit for Evidence- Based Practice Habit for Collaborative Learning

13. NIHR Southampton Biomedical Research Centre ‘Potentially better practices’ Evidence-based guidelines Not all tested by randomised controlled trials, but best available info ‘Potentially’ better – depends on how they are implemented Shown by NIC/Q-2000 teams to improve achievement of clinical aims

14. NIHR Southampton Biomedical Research Centre “FBI” – fight bacterial infection 8 aspects for potentially better practice Hand washing Diagnosis of sepsis Hub care Lipid duration Line duration Skin emollients Skin punctures Maximal barrier precautions

15. NIHR Southampton Biomedical Research Centre iNIC/Q programme Series of internet learning collaboratives –Video and telephone links –Pre-work –Lectures –Discussion and project planning –Work on local QI initiatives Use on-going bench-marking to assess progress

16. NIHR Southampton Biomedical Research Centre iNIC/Q 2004: Sepsis 18/2Introduction to iNIC/Q 22/3Nosocomial infection in NICU 16/6Potentially better practices to reduce infection 22/9Antibiotic use and resistant organisms 17/11Outbreaks and special pathogens

17. Infection Rates (VON Babies) Southmead 2001-2006

18. NIHR Southampton Biomedical Research Centre Key messages Change IS possible… It requires a multifaceted approach… Good teamwork is crucial… You can’t take your eye of the ball… Have some fun along the way… You need accurate data

19. NIHR Southampton Biomedical Research Centre Further Developments in VON ‘Nightingale’ –Continuous on-line reporting –Increasing speed of data verification: now 30 minutes Increasing focus on safety and family communication Regional and National Networks –California –Italy –UK –Europe

20. NIHR Southampton Biomedical Research Centre Quality improvement in nutrition Potentially better practices in NIC nutrition –interventional study within VON ‘NIC/Q’ ; ‘potentially better practices’ with before and after data; earlier initiation of feeds; earlier full feeds; higher energy intake; lactation support: shorter LOS; better wt gain Kuzma-O’Reilly B, Duenas M, Greecher C et al. Pediatrics 2003;111:e461-70 Impact of standardised feeding regimen on incidence of NEC –Systematic review; 6 observational studies with before and after data; RR of 0.13 (95% CI 0.03-0.5) Patole SK, de Klerk N. Arch Dis Chld F&N 2005;90:147-51

21. NIHR Southampton Biomedical Research Centre SPIN Study, Southampton Standardising Preterm Infant Nutrition 2009 (Jan-Dec) Baseline (SPIN 1) ‘SENNAT’ to measure and display nutrition and growth 2011 (Jan-July) pre-intervention 2011 (Aug-Dec) partial intervention 2012 (Jan-Dec) prospective intervention group –Guidelines for nutritional care –Screening tool for nutritional risk –Neonatal nutrition team –Nurse ‘champions for nutrition’ 2013 (Jan-Jun) post-intervention group Outcomes –Neonatal: daily nutrition AND daily nutrient intakes throughout stay –Neonatal growth to discharge –Body composition and plasma micronutrients –Normalisation Process theory to assess embedding into ‘normal practice’

22. NIHR Southampton Biomedical Research Centre Normalization Process Theory May, C, et al. Sociology 2009;43(3):535-554 Example of ‘implementation science’ Explains how new interventions become routinely embedded within in their contexts Explains routine embedding by 4 domains: –Coherence Understand difference from current practice –Cognitive participation Appreciate the relevance of new practice –Collective action Support and agreement of team members –Reflexive monitoring Effects of change seen to be positive Attempts to explain embedding of new behaviour through individual and collective work, as well as external influences Administered as on-line questionnaire: 16 questions

23. NIHR Southampton Biomedical Research Centre Summary of SPIN outcomes Complex intervention resulted in improvement in protein intakes and reduced EUGR The clinical team was already motivated to improve nutrition support (high NPT scores at start) however scores increased during study Despite this some interventions and outcomes did not improve Regular and constructive feedback is essential (‘reflexive monitoring’ in NPT) – and must be acted on

24. NIHR Southampton Biomedical Research Centre 2014: 25 years of VON

25. NIHR Southampton Biomedical Research Centre 2014: 25 years of VON

26. NIHR Southampton Biomedical Research Centre 2014: 25 years of VON

27. NIHR Southampton Biomedical Research Centre Improved outcomes in VON

28. NIHR Southampton Biomedical Research Centre Improved outcomes in VON But….only 30 units in UK

29. NIHR Southampton Biomedical Research Centre UK Neonatal Data Systems BADGER SEND NNAP NDAU NNRD

30. NIHR Southampton Biomedical Research Centre BADGER ~ 2000 Clinical database Designed and managed by ‘Clevermed’ –Dr Andy Lyon, Peter Badger Recorded all admissions Standardised entries Admission and discharge summaries Generated data for audit

31. NIHR Southampton Biomedical Research Centre SEND – early 2000s Standardised Electronic Neonatal Database Started as South-East Neonatal Database Aimed to encompass all UK NICUs Managed on ‘Clevermed’ platform Provided bench-marking service www.neonatal.org.uk/Healthcare+Professionals/SEND/ https://nww.neonatal.nhs.uk/nnn/ BUT lack of uniform definitions

32. NIHR Southampton Biomedical Research Centre NNAP ~ 2007 www.rcpch.ac.uk/nnap National Neonatal Audit Programme UK based project to look at consistency of IC/SC care for babies Collaboration between DH and RCPCH Funded by Healthcare Commission Data collected electronically on –Unit variables – size, staffing, facilities etc –Baby variables – gestation, gender, items of care, transfer

33. NIHR Southampton Biomedical Research Centre NNAP - topics Do all babies 26-28 weeks receive surfactant? Do all<28wks have temp and BP in 1 st h? Do all <1250g have 1 st ROP screen as I/P? Do all <33wks receive MBM while I/P? Are parents seen by senior staff in 1 st 24 h? Are rates of normal survival at 2 years comparable?

34. NIHR Southampton Biomedical Research Centre Temperature within 1 hour – level 3 NNUs 2011

35. NIHR Southampton Biomedical Research Centre Proportion of eligible babies receiving any MBM at discharge – Level 3

36. NIHR Southampton Biomedical Research Centre NNRD ~ 2012 National Neonatal Research Database Increased consensus and accuracy Almost all UK NNUs participate –Almost all VLBW infants recorded Generating large volume research data for UK studies –East of England Care Bundle –Growth study –NEC study

37. NIHR Southampton Biomedical Research Centre A regional care bundle aimed at increasing maternal breast milk use in preterm infants Battersby, C et al. Arch Dis Child F&N 2014;99:F395-401 n= 3,680 EoE n= 29,492 UK

38. NIHR Southampton Biomedical Research Centre Mean growth curves of preterm infants 23-31 weeks gestation, born in UK 2006-11 (UK 1990 weight charts) Cole T,J. et al ArchDisChildF&N, 2014;99:F34-40 Data on 5009 infants 103194 weight measures

39. NIHR Southampton Biomedical Research Centre Conclusions Neontatology has led the way in harnessing large data sets for QI and research Lessons adapted from industry – safety and QA VON started as a research tool and evolved to practical reporting and QI UK systems started with practical reporting and evolved to QI and research Both systems provide extremely useful outputs Both systems rely on accurate and consistent data input Consistent data between large networks can enable global comparison of outcomes

40. NIHR Southampton Biomedical Research Centre Thank you for listening!