1. Learning from child death review in the United States Sharon Vincent

2. Overview CDR in the US – the national picture The national case reporting system The SUID case registry Consideration of our own data systems and the case for more standardisation and consistency

3. The national picture is complex Only one state does not have CDR No federal requirements or funding Variability - state review only; state & local; state & regional; local only Unstable funding situation (some states have no funding) Some have legislation; others do not Move from child welfare/justice to public health and broadening focus No standardised method of data collection means comparability across states and identification of national trends is difficult

4. StateStructure and locationLegislationScope MarylandState and local (maternal & child health) MandatedAll 0-18 medical examiner deaths CaliforniaLocal only; state FCANS Program (public health) Permitted; state mandate to track CAN Mandate for CAN; most review all coroner deaths to 18 ColoradoState and local (dept of public health) MandatedMandate to review CAN/known to social services, but all unexpected & unexplained to 18 reviewed GeorgiaState and local (office of child advocate) MandatedInjury/SIDs/unexpected/unattended physical deaths to 18 District of Columbia State only (office of the chief medical examiner) MandatedAll causes 0-18 DelawareState and regional (administrative offices of the court) MandatedAll to 18; near deaths (CAN); stillbirths after 20 weeks gestation WashingtonLocal only; state support (dept of health) Authorised; mandate for state to assist Varies, most review all unexpected to 18 WisconsinState and local (children’s health alliance) NoVaries, state team recommend all up to 18

5. National Centre for Child Death Review (NCCDR) National resource centre funded by US Government Maternal and Child Health Bureau Sharing good practice; training; website includes state reports, best practice tools and state spotlights (www.childdeathreview.org) Funded since 2002 to investigate the feasibility of a standardised reporting tool - little consistency in type of data being collected and analysed

6. NCCDR case recording system Web based secure system that captures the whole story of the child’s death not just the outcomes of a case review to inform local, state and national improvements in child safety and prevent deaths 37 states use the national system National database of more than 88,000 deaths NCCDR provide training and help desk support States can access and download data and generate annual reports as well as specialised reports on different types of deaths; child health and safety advocates can access aggregated state and national data to inform child heath and safety prevention; access for secondary research

7. Data elements Child, family, supervisor and perpetrator Incident place, events and emergency response Investigation actions Risk and protective factors by cause of death Acts of omission or commission contributing to the deaths e.g. on sleep related infant deaths and consumer product related deaths Services, needed, provided or referred Recommendations for and actions taken to prevent deaths Factors affecting the quality of the case review

8. National findings 1995-2010 54% under 1; 18% 1-9; 8% 10-15; 17% 15 or over 59% male; 40% female 62% white; 25% African American; 7% missing; 6% other 53% natural; 23% accident; 4% suicide; 7% homicide; 7% undetermined; 6% missing (Covington, T. (2011) The US National Child Death Review Case Reporting System, Injury Prevention 17 (Supplement 1)

9. Challenges Data cannot be compared state to state or sometimes team to team due to variation in types & timing of reviews Differences in quality of data between teams and states – missing data There is a data dictionary but some teams develop their own definitions There are some subjective questions e.g. Was this death preventable? Did an act of omission contribute to the death? Data is important but data collection should not drive the review process

10. SUID case registry Centers for Disease Control and Prevention (CDC) pilot project to better understand SUIDs Additional questions in case reporting tool piloted in 7 states (Colorado, Georgia, Michigan, New Jersey, New Mexico, Minnesota and New Hampshire) to ensure review of 100% of SUIDs To provide more comprehensive data to identify SUID cases; to determine which factors in the sleep environment contribute to SUID cases; to enable better identification of high risk groups to target interventions

11. Questions to consider 1) How does the US case reporting system compare to your own data collection and reporting system? 2) What data does your team record? How are you recording data? 3) Are you collecting the right data? Are you missing anything? Is there any information you’re not collecting but should be? Are you collecting any information you don’t use? 4) What do you do with the data? Are you using it to maximum effect? Who is able to access and use it? Could you do more with it? 5) How much consistency is there across teams? Should there be more consistency? What would be the benefits of standardising data collection nationally and internationally? What would be the disadvantages?

12. Contact details Dr Sharon Vincent Reader in Social Welfare Centre for Health and Social Care Improvement (CHSCI) School of Health and Wellbeing University of Wolverhampton Tel – 01902 518622 Sharon.vincent@wlv.ac.uk