Childhood injury prevention: Strategic directions for coordination in New South Wales Prepared for the NSW Child Death Review Team by the Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong (December 2016) A report under section 34H Community Services (Complaints, Reviews and Monitoring) Act 1993 November 2017 Kathleen Clapham Cristina Thompson Darcy Morris Acknowledgements: The authors acknowledge the contribution of the 28 stakeholders who offered their time and expertise during the interviews that have been critical to the project’s outcomes. We would also like to thank key staff from the funding body, the Office of the NSW Ombudsman, for their assistance. In particular, the ongoing support from Monica Wolf throughout the project is gratefully acknowledged. Several additional members of the Centre for Health Service Development provided valuable research assistance. The authors acknowledge the support provided by Keziah Bennett-Brook, Pam Grootemaat and Habibur Seraji. Suggested citation: Clapham K, Thompson C and Morris D (2016) Childhood injury prevention: Strategic directions for coordination in New South Wales. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong. ISBN: 978-1-925569-68-1 Foreword The NSW Child Death Review Team has a strong interest in injury prevention. In NSW each year, over 40 percent of deaths of children and young people aged between one and 17 years are injury-related. While most injury does not – thankfully – result in death, the burden of injury is a significant public policy issue. Hospitalisations related to injury are 250 fold higher than for deaths, and the cost to the health system is more than $200 million per annum nationally (Mitchell R, Curtis K, et al: 10 Year Review, University of Sydney 2017). In 2015, and following impetus built by a state-wide forum on childhood injury prevention, we commissioned the Centre for Health Service Development at the Australian Health Services Research Institute, University of Wollongong to map prevention structures and activities related to childhood mortality and morbidity. That report – ‘A scan of childhood injury and disease prevention infrastructure in NSW’ – was tabled in Parliament in October 2015. The scan confirmed there was a need for stronger leadership and coordination to deliver further improvements in childhood injury and disease prevention in NSW. The report that follows builds on that earlier work by addressing a number of critical questions about effective approaches to coordination of injury prevention initiatives. Drawing on comparable systems nationally and internationally, as well as expert stakeholder interviews throughout 2016, the report identifies strategic directions for coordination of initiatives in NSW. Key themes are the need for effective policy leadership; strong data and information systems; research and knowledge translation networks; and coalitions, collaborations and partnerships. The report presents considerable evidence that childhood injury prevention is the responsibility of a number of agencies in NSW, and needs a whole of government response. The recommendation made in the report – that the CDRT refer the report to the NSW Ministry of Health for discussion about the way forward for childhood injury prevention – implicitly acknowledges that NSW Health has been a leading agency in coordination of data and information access and promoting research on childhood injury. The recommendation does not suggest that NSW Health alone should lead NSW in this endeavour. In a response to a draft of this report (see Appendix 7), the Secretary for NSW Health has noted the need for coordinated work across government and non-government stakeholders. I appreciate the Secretary’s view that NSW Health will have an important contribution to make to this work. I commend this report to all government and non-government agencies with an interest in preventing childhood injury. It should encourage discussion - and I trust action - from policy makers to respond positively to the need for effective coordination and collaboration in this critical area. Finally, I wish to thank the authors – Kathleen Clapham, Cristina Thompson and Darcy Morris – for their thorough and insightful analysis. Professor John McMillan AO Convenor, Child Death Review Team Acting NSW Ombudsman Table of Contents List of figures .................................................................................................................................... i List of tables ..................................................................................................................................... i List of appendices ............................................................................................................................ ii List of abbreviations / acronyms .................................................................................................... iii Executive summary ........................................................................................................................ iv 1 Introduction ............................................................................................................................. 1 1.1 Background ....................................................................................................................... 1 1.2 Scale and impact of childhood injury ............................................................................... 2 1.3 Project scope .................................................................................................................... 3 1.4 Report structure ............................................................................................................... 3 2 Methods .................................................................................................................................. 5 3 Key components of a coordinated approach to childhood injury prevention ....................... 6 3.1 Policy leadership ............................................................................................................... 6 3.2 Data and information systems ....................................................................................... 18 3.3 Research and knowledge translation networks ............................................................. 27 3.4 Coalitions, collaborations and partnerships ................................................................... 35 3.5 Role of the Child Death Review Team in childhood injury prevention .......................... 45 3.6 Conclusion ...................................................................................................................... 54 4 References ............................................................................................................................. 57 List of figures Figure 1 Methods and sequence of research activities .............................................................. 5 Figure 2 PRISMA flow chart ...................................................................................................... 80 Figure 3 Child Safety Action Plan (CSAP) development process............................................. 130 Figure 4 Child Safety Action Plan challenges and issues ........................................................ 131 Figure 5 How did Sweden achieve its reductions in childhood injuries? ............................... 133 List of tables Table 1 Organisation types of interview participants ............................................................. 81 Table 2 NSW mortality-specific and injury morbidity and mortality data collections ............ 94 Table 3 New Zealand injury datasets ..................................................................................... 113 Childhood injury prevention: Strategic directions for coordination in New South Wales Page i List of appendices Appendix 1 Methods .................................................................................................................. 78 Appendix 2 Participant information sheet and interview guide ................................................ 83 Appendix 3 Findings from the literature – Australian context ................................................... 86 Appendix 4 Findings from the literature – International context ............................................ 110 Appendix 5 Recommendations from the TACTICS project....................................................... 143 Appendix 6 NSW Research Grants – Childhood Injury Prevention & Management Round 1 . 144 Appendix 7 Letter from NSW Health………………………………………………………………………………….. 145 Childhood injury prevention: Strategic directions for coordination in New South Wales Page ii List of abbreviations / acronyms ABS Australian Bureau of Statistics ACYP Advocate for Children and Young People (NSW) AIHW Australian Institute of Health and Welfare ARC Australian Research Council CDC Centers for Disease Control (US) CDR Child Death Review CDRT Child Death Review Team CHeReL Centre for Health Record Linkage CChIPS Center for Child Injury Prevention Studies (Canada) CHOP Children’s Hospital of Philadelphia CIHR Canadian Institutes for Health Research CIRP Center for Injury Research and Policy (Canada) CSAP Child Safety Action Plan ECSA European Child Safety Alliance ED Emergency Department ICCWA Injury Control Council of Western Australia MUARC Monash University Accident Research Centre NeuRA Neuroscience Research Australia NGO Non-Government Organisation NHMRC National Health and Medical Research Council NISU National Injury Surveillance Unit QISU Queensland Injury Surveillance Unit TACTICS Tools to Address Childhood Trauma, Injury and Children’s Safety VISU Victorian Injury Surveillance Unit WHO World Health Organisation Childhood injury prevention: Strategic directions for coordination in New South Wales Page iii Executive summary This report has been commissioned by the Office of the NSW Ombudsman on behalf of the NSW Child Death Review Team (CDRT). The scale and impact of childhood injury within Australia is significant. The extent of childhood injury in NSW was outlined in a report recently released by the Bureau of Health Information (2016) detailing the utilisation and experiences of children and young people in NSW hospitals. It found the leading causes of Emergency Department (ED) visits among the 0-17 year age group in 2014-15 were injury, poisoning and other external causes (32 percent of all visits). A scan of childhood injury and disease prevention infrastructure in NSW was completed in 2015 (Phase one). The scan confirmed that there is a need for stronger leadership and coordination to deliver further improvements in childhood injury and disease prevention in NSW. This report explores strategic options for coordination in childhood injury prevention (Phase two of this project). The findings are a synthesis of issues identified through a rapid review of the literature and a series of expert stakeholder interviews. The literature review specifically focused on coordination mechanisms used within Australia and in several other countries where examples of advances in childhood injury prevention efforts were evident. This literature review was supplemented by a focused stakeholder consultation. Stakeholders were predominantly located across Australia but included several representatives from other countries perceived as leaders in the coordination of childhood injury prevention. The key components of a coordinated approach to childhood injury prevention include:  Policy leadership  Data and information systems  Research and knowledge translation networks  Coalitions, collaborations and partnerships In many countries, leadership and coordination along with sustained infrastructure support have resulted in significant gains in combatting injury. The level of policy leadership in childhood injury prevention varies across Australian states and territories with injury prevention considered a shared responsibility between all jurisdictions. Ultimately as preventing unintentional injuries cuts across the responsibility of a number of government departments, one department must take the lead and coordinate activities to ensure that effort is not duplicated or, worse still, not undertaken. The Centers for Disease Control in the United States (US) and the non-government organisation, Parachute Canada, provide two examples of policy leadership in childhood injury prevention in these respective countries. Effective childhood injury prevention efforts must be data driven and evidence based. Strengthening surveillance systems, particularly through the more effective use of existing datasets has been successfully demonstrated internationally. Within Australia, the International Classification of Diseases (ICD) is adopted nationally for admitted patient care. In most Emergency Department (ED) systems the only mandatory code to capture will be the principal Childhood injury prevention: Strategic directions for coordination in New South Wales Page iv diagnosis. Injury data items such as cause of injury, location and type of injury are included in the national minimum data set and it is possible to collect these if the ED has the capacity to capture multiple ICD codes. However these items are not mandatory, and it appears Western Australia and Victoria are the only two states currently collecting them as part of their ED minimum data set. The former NSW Kids and Families provided a funding grant in 2015 for a stocktake of existing population-based data collections that are capable of providing information on injury mortality or morbidity in NSW involving children and young people aged ≤25 years. This provides a valuable resource for planning future improvements in childhood injury surveillance in NSW. The unique access that the NSW CDRT has to data and information through the Death Review System presents an opportunity for enhanced analysis and reporting by the Team through appropriate data linkage. Swedish population registries and the Welsh Secure Anonymised Information Linkage (SAIL) initiative provide useful international examples of how effective coordination of data and the use of data linkage can inform research, policy and practice. The most effective strategies to support research coordination centre on clear government priorities based on existing evidence and supported by adequate funding and mechanisms to facilitate research dissemination and translation. Networks and collaboratives are useful in bringing researchers together. There is merit in enhancing effective research networks to support greater collaboration in the advancement and translation of knowledge in childhood injury prevention. Lessons can also be learned from the research coordination efforts of the Center for Child Injury Prevention Studies (CChIPS), Children’s Hospital of Philadelphia (CHOP) Research Institute and closer to home from the Monash University Accident Research Centre (MUARC). The very broad range of stakeholders involved in action to prevent injury to children makes coalitions, collaborations and partnerships an essential component of the way most organisations and individuals work in this field. Coalitions can extend from data collection to research to implementation partnerships, formal partnerships, informal linking with other organisations and broad networks. The European Child Safety Alliance provides a comprehensive example of what can be achieved in childhood injury prevention through an international alliance. Within Australia examples of coordinated coalitions include the Australian Injury Prevention Network and the NSW Paediatric Injury Prevention and Management Research Reference Group (which arose from the NSW Paediatric Injury Prevention and Management Research Forum). A number of significant barriers exist to establishing coordination of injury prevention at a national, state and territory level including:  Injury is a complex category: with multiple mechanisms, causes, contributing factors.  Lack of clear and consistent leadership from government  Funding challenges  Data availability and access  Working in silos  Research challenges Childhood injury prevention: Strategic directions for coordination in New South Wales Page v  Community attitudes. The NSW Child Death Review Teams can contribute to an improved understanding of childhood injury prevention. The number of serious injuries experienced by children each year is far greater than the annual number of child deaths. The burden of childhood injury is significant as are the social and economic consequences. The legislative remit prescribes the role of the CDRT in NSW, for example a focus on 0-17 year olds. The CDRT is in a unique position to integrate the insights it gains from the review of child deaths (particularly for vulnerable populations) to inform understanding of both intentional and unintentional childhood injury prevention priorities and vulnerable groups. Incorporating projects that study the broader population of serious injury will enhance the CDRT capacity to identify factors and trends that lead to deaths in a small subset of such children. While it is not suggested that the CDRT take the lead agency role in NSW for childhood injury prevention there is a lost opportunity by not widening the brief of the team to include serious injury and fostering greater collaboration with injury researchers and practitioners. Such a decision would also be dependent on available resources. The report concludes with a discussion of the implications of these findings for NSW. However decisions about what is feasible at a state level cannot be made without the input of appropriate representatives of government. The key strategic observations are listed below; these provide a common starting point for future discussions:  Strong partnerships amongst key stakeholders and robust inter-agency and cross- organisational relationships provide the foundation for effective coordination.  Coordination of childhood injury prevention is complex and not achieved through a single initiative but through action on multiple fronts (for example leadership resulting in clear policy direction, robust data from effective surveillance systems used to underpin evidence- based approaches, support for high quality research and knowledge translation and collaborative mechanisms to bring people together that are funded, supported and sustained over time).  There is no magic bullet that generates policy leadership; this comes from political will and is articulated by committed policy officers through strategic frameworks and plans that identify priorities for action and set the agenda for change. As preventing unintentional injuries cuts across the responsibility of a number of government departments, one department must take the lead and coordinate activities to ensure that effort is not duplicated or, worse still, not undertaken.  Effective child injury prevention efforts must be data driven and evidence based. Strengthening surveillance systems, particularly through the more effective use of existing datasets has been successfully demonstrated internationally as has the use of state or national “action indicators” to monitor progress in childhood injury prevention efforts. There are opportunities to increase the use of data linkage to better target injury prevention interventions for the most vulnerable populations. The NSW Ministry of Health Childhood injury prevention: Strategic directions for coordination in New South Wales Page vi is already leading the way in the coordination of data and information access on injuries involving children and young people.  The most effective strategies to support research coordination centre on clear government priorities supported by adequate funding and mechanisms to facilitate research dissemination and translation. Networks and collaboratives are useful in bringing researchers together.  There need to be clear mechanisms to bring people together that are funded, supported and sustained over time. The Australian Injury Prevention Network and the NSW Paediatric Injury Prevention and Management Research Reference Group provide examples of mechanisms to foster research collaborations.  The CDRT has a unique insight into factors that might mitigate serious injury through its annual review of child deaths in NSW. Child death review findings, supplemented by projects addressing the broader childhood population with serious injury, can and do inform prevention strategies. There is scope for the CDRT to strengthen their involvement in childhood injury prevention; what form that takes will be guided by the views of the CDRT and its legislative remit. It is recommended that this report be referred to the NSW Ministry of Health for initial discussion with the CDRT, about the way forward for childhood injury prevention. Childhood injury prevention: Strategic directions for coordination in New South Wales Page vii