Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The challenges of collecting and disseminating indigenous data from the coronial system

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Presentation Summary 1.What is the NCIS 2.How is “Indigenous Status” collected 3.Data accuracy issues 4.Issues surrounding release of the data 5.Actions to resolve issues

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Overview National Coronial Information System (NCIS) National database containing information on deaths reported to an Australian Coroner since 1 July 2000 – QLD since 1 January (New Zealand to commence transmitting data during 2010). Funded by the State/Territory Justice Departments and key Commonwealth agencies, and managed by the Victorian Institute of Forensic Medicine (VIFM).

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Overview Coded & Contextual Data Attached Documents Externally Provided Data Demographic Details. Time & Location of events. Activity at time of Incident. Mechanism and Object details. Cause(s) of Death: 1a, 1b, 1c, 1d, 2, 3. Indigenous Origin Police summary of circumstances. Autopsy report. Toxicology report. Coronial Findings. ICD-10 Cause of Death Codes ASGC (Geographical) Codes Safework Australia codes

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Overview To allow death investigators to identify other similar fatalities that have occurred previously. –Examine extent of a problem/risk to public safety –Previous recommendations made about issue. Standardise coding of coronial information –Allow quick and reliable identification of similar cases Identify trends and patterns More timely access to national information for research and monitoring purposes.

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Overview Data is entered into Local Case Management Systems (LCMS) at each coroners office New data securely uploaded each night Made available to users via online Web interface –fielded data or keyword searching of full text reports Closed cases are quality checked by NCIS unit

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Users Death investigation users Coroners, pathologists, forensic scientists, police assisting the coroner, coronial clerks Third party users with a bona fide interest in death and injury prevention Government departments (e.g. Health, WorkCover, TAC, VicRoads, Drug Advisory Groups) Non-profit research agencies (RLSSA, Turning Point) Universities/PhD students

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Statistics The transmission of data to the NCIS commenced on 1 July 2000 (QLD commenced transmission 1 January 2001). As of 20 October 2010 –204,959 cases stored within the NCIS; –159,442 cases closed (coding completed);

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Statistics % of Total Cases % Useable % Cases Natural % Cases External % Cases Other National NSW 28.4 VIC 23.1 QLD 20.6 SA 14.2 WA 8.0 TAS 2.4 NT 1.6 ACT 1.6

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Statistics % of Total Cases % Useable % Cases Natural % Cases External % Cases Other National 77.8 NSW VIC QLD SA WA TAS NT ACT

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 The NCIS - Statistics % of Total Cases % Useable % Cases Natural % Cases External % Cases Other National NSW VIC QLD SA WA TAS NT ACT

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Indigenous Origin The NCIS definition is based on Commonwealth definition/codes: Three vital parts 1.Descent; 2.Self- identification 3.Community Acceptance From a Coronial perspective: “a person of Aboriginal or Torres Strait Islander descent who identifies as an Aboriginal or Torres Strait Islander and is accepted as such by the community in which he or she lives”

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Indigenous Origin Indigenous Origin Codeset (upon case closure): 1 – Aboriginal not TSI 2 – TSI not Aboriginal 3 – Both Aboriginal and TSI 4 – Neither Aboriginal or TSI 9 – Unlikely to be Known

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Indigenous Statistics Breakdown of Indigenous Origin – Closed Cases [Total of 159,476 closed cases as of 20 Oct 2010] Aboriginal not TSI5,357(3.4%) TSI not Aboriginal403(0.3%) Both Aboriginal and TSI224(0.1%) Neither Aboriginal or TSI111,932(70.2%) Unlikely to be Known41,560(26%)

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Collection of Indigenous Origin Mainly sourced from police report of a death to the coronial office – initial investigation and interviews with relatives and witnesses.

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Collection Concerns 1.Self-identification – not possible 2.Relatives / Witnesses – may not know or wish to provide the information 3.There is no standard police form nationwide –Some states do not have the field on their initial reporting of death forms (VIC, SA) 4.There are no formal guidelines for collection of indigenous data –Suspect different methods used to ascertain indigenous origin of deceased; –Some jurisdictions appear better at collecting than others

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Further Collection Concerns What definition is actually being used –What % of indigenous heritage required before classified as such? How do you know the deceased’s heritage? What if heritage is sufficiently indigenous but did not identify as such in life? What if heritage is not sufficiently indigenous but did identify as such in life?

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Accuracy Issues Different levels of collection Different methods of identification Different ways of coding this field when no information on indigenous status –Do coders select “Unlikely to be Known” if no information, or assume a default of “Neither Aboriginal or TSI”

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Release of the data For third party users (non-death investigators) application process to access data –Involves consideration by NHMRC constituted Ethics Committee Data on the indigenous status of individuals can be considered “sensitive” information –Investigations into any additional considerations that need to be made before release of indigenous status field to data users

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Specialist Advice General access to Indigenous Origin data ceased in late 2002 –Due to recognised cultural sensitivities Since then NCIS has struggled to find appropriate solution to allowing 3 rd party access. –Requested advice from: NACCHO NAGATSIHID Vic DOJ Indigenous Issues Unit NHMRC CAHEC FaHCSIA NSW AH & MRC HREC

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Specialist Advice No definitive advice about this issue Since the provision of the Indigenous field is part of general demographic overview, but still needs specialist consideration if research project specifically includes Indigenous deaths NCIS have been attempting to establish an Indigenous Ethics Advisory Panel

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Specialist Advice Indigenous Ethics Advisory Panel –Indigenous representatives for a single point of ethical consideration for NCIS indigenous research applications –Members of Aboriginal and Torres Strait Islander Health Research Advisory Committee (ATIHRAC) [committee within the NHRMC] has agreed to be involved in a review process.

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Some of the complexities Jurisdictional Issues –State entities unwilling to be responsible for considering national applications –Different tribal groups contained across the national/state mortality data –Unwieldy bureaucracy if each separate group consulted –Reluctance for permanent indigenous rep on existing Ethics Committee

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Possible Resolutions… Collection Implement National Standard Police Form –Consistent section about indigenous persons Improved data sharing/linkage between data collections –Comparison of ABS & NCIS –Use of birth information Alternative data sources –Data collected from funeral homes

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Possible Resolutions… Accuracy Development of standard practice for coding when no information available. Possible training with police/data collectors.

Leanne DakingQuality Manager, NCIS HIMAA Conference - 27 October 2010 Thank You Questions