A Survey to identify who, how and what maternity data are collected in Welsh Maternity Units

1. A Survey to identify who, how and what maternity data are collected in Welsh Maternity Units Cate Langley MSc Lead Midwife, North Powys.

2. Accurate, reliable data.

3. A Welsh Issue? • Not everyone appears to be collecting the same information. • Not all units appear to be collecting ‘maternity tail’ data. • There is confusion regarding some data definitions. • There is a lack of clarity on where data goes once it leaves the midwives. • There is a lack of clarity on what is being done with the data nationally and locally. • There does not appear to be any information coming back to individual NHS trusts regarding the data collected nationally and minimal feedback from local data collection. • There is no information on the data collection systems already in use across the Principality.

4. Aim of study To identify what data are collected, where that data are collected and by whom in maternity services.

5. Objectives • To identify whether the problem of data access and quality is a local issue to Welsh maternity services or whether a body of evidence exists that identifies this as a far wider heath care issue. • To identify a means of collecting information on how and what data are collected within Wales. • Once a means of collection is identified to include all maternity services in Wales in the collection process. • To review findings and formulate recommendations for the future collection and analysis of data.

6. Process • Literature review • Design • MREC • R&D Approval • Analysis • Response

7. Data collection systems in Wales

8. Systems & methods of collecting data

9. Computeriseddatacollection

10. Not everyone appears to be collecting the same information

11. Maternal date of birth Maternal origin Ethnicity (census definition) Ethnicity (local definition) Maternal occupation Father’s occupation Marital/Cohabitation status Maternal height Medical history Previous blood transfusion Maternal rubella status Gestation at booking Gestation by LMP Assisted conception AN booking appointment Ante natal visits Out patient ANV Actual place of birth Reason for change of place of birth Presentation Apgar score at 1 minute Apgar scores at 5 minutes Paediatric estimation of gestational age Assessment of hips Smoking history Smoking during pregnancy Parity Previous births Previous stillbirths Previous miscarriages Previous terminations of pregnancy Previous caesarean section Antenatal in patient admissions Antenatal tests Ultrasound scans Antenatal administration of steroids Method of onset of labour Date and time of birth Method of delivery Length of 1st stage Length of 2nd stage Length of third stage Third stage management Perineal tears Episiotomy Intended place of birth Gestation at onset of labour (LMP) Gestation at onset of labour (USS) Live or stillbirth Multiple birth Birth order Pain relief Reason for administration of pain relief Pain relief in labour Pain relief delivery Pain relief post natal Suturing of tears Maternal complications Status of personconducting delivery Length of postnatal stay Post natal outpatients Postnatal community visits Sex of baby Birth weight Head circumference Length Jaundice Congenital abnormalities Admission to Special care Baby Unit Neonatal resuscitation Feeding at discharge Metabolic screening Neonatal BCG Paediatric follow-up

12. Statistics Smoking history Multiple birth Smoking during pregnancy Birth weight Onset of labour Method of delivery Pain relief Perineal tears Episiotomy Suturing of tears Live or stillbirth

13. Audit of data accuracy

14. Production of statistics

15. Accessing missing data

16. “All statistics are obtained manually from delivery book entry. I’m sure information is sometimes missed out due to lack of space or error by midwife. The time it takes to collect this data means we are always at least 3-4 months behind.” “They are probably available from the system that we use but no one trained or has time to get them”

17. Not all units appear to be collecting ‘maternity tail’ data. Wrong

18. There does not appear to be any information coming back to individual NHS trusts regarding the data collected nationally and minimal feedback from local data collection. There is a lack of clarity on where data goes once it leaves the midwives.

19. ? WOMEN MATERNITY COMPUTER Maternity notes HOSPITAL COMMUNITY TEAM Registrar of births Paper record OUTSIDE AGENCIES PEDW, WAG Data Flow Computer record

20. There is confusion regarding some data definitions

21. Sharing information Aggregated Patient specific GPs GPs LHBs Registrar of births Regional office Child Health PEDW WAG Need to know CEMACH, CARIS

22. Care outside of Hospital

23. Time ?

24. Past and present strategies

25. Study limitations

26. How are data collected? A mixture of computer and paper What data are collected? Large amounts Who collects data? Predominately midwives

27. Recommendations • That agreement is made regarding the data items that need to be collected across Wales, to include agreement on data definitions. • National data bases, that presently hold maternity information, be reviewed for their ability to provide the information clinicians, users, trusts and government require. • That any future databases reflect the care given in community settings as well as hospital. • That no new data collection process is introduced without proper analysis of the costs and benefits to clinicians, users, trusts and government.

28. Recommendations • That databases, whether local or national are able to provide information to users on local services, trusts on their activity and how they compare to others and individual clinicians on the outcomes of the care they give. • That any strategies for maternity services also identify the data collection requirements necessary to prove success and ensure these are identified and collectable prior to implementation. • That trusts are encouraged to make accurate, reliable data a priority for maternity services by identifying an individual(s) within the trust to be responsible for the coordination of data collection, reliability and completeness.

29. Accuracy of data collected. • Accessibility of data collected and its analysis. • Completeness. • Non-standard terminology. • Amounts of data collected versus amounts used. (Audit Commission, 1995a,1995b, 2002; House of Commons Health Committee, 2003; WAG, 2002a

30. There is a lack of clarity on what is being done with data nationally and locally

31. Training