The challenges of collecting and disseminating indigenous data from the coronial system

Leanne Daking Quality Manager, NCIS HIMAA Conference - 27 October 2010

The challenges of collecting and

disseminating indigenous data from the coronial

system


Presentation Summary

1. What is the NCIS 2. How is “Indigenous Status” collected3. Data accuracy issues4. Issues surrounding release of the

data5. Actions to resolve issues


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 2001.(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).


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


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.


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


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


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);



% of Total Cases

% Useable

% CasesNatural

% Cases External

% CasesOther

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



% of Total Cases

% Useable

% CasesNatural

% Cases External

% CasesOther

National 77.8

NSW 28.4 71.4

VIC 23.1 87.4

QLD 20.6 56.5

SA 14.2 94.9

WA 8.0 87.2

TAS 2.4 92.5

NT 1.6 90.4

ACT 1.6 93.6



% of Total Cases

% Useable

% CasesNatural

% Cases External

% CasesOther

National 77.8 62.2 36.2 1.6

NSW 28.4 71.4 62.9 36.3 0.7

VIC 23.1 87.4 61.0 36.7 2.3

QLD 20.6 56.5 50.8 47.1 2.2

SA 14.2 94.9 79.9 19.1 0.9

WA 8.0 87.2 51.8 46.3 1.9

TAS 2.4 92.5 57.6 41.4 1.1

NT 1.6 90.4 47.0 49.4 3.6

ACT 1.6 93.6 69.1 29.6 1.3


Indigenous Origin

The NCIS definition is based on Commonwealth definition/codes:

Three vital parts1.Descent;2.Self- identification3.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”


Indigenous Origin

Indigenous Origin Codeset (upon case closure):

1 – Aboriginal not TSI2 – TSI not Aboriginal3 – Both Aboriginal and TSI4 – Neither Aboriginal or TSI9 – Unlikely to be Known


Indigenous Statistics

Breakdown of Indigenous Origin – Closed Cases

[Total of 159,476 closed cases as of 20 Oct 2010]

Aboriginal not TSI 5,357 (3.4%)

TSI not Aboriginal 403 (0.3%)

Both Aboriginal and TSI 224 (0.1%)

Neither Aboriginal or TSI 111,932 (70.2%)

Unlikely to be Known 41,560 (26%)


Collection of Indigenous Origin

• Mainly sourced from police report of a death to the coronial office – initial investigation and interviews with relatives

and witnesses.


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


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?


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”


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


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 3rd party access.– Requested advice from:

• NACCHO• NAGATSIHID • Vic DOJ Indigenous Issues Unit• NHMRC• CAHEC • FaHCSIA • NSW AH & MRC HREC


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


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.


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


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


Possible Resolutions…Accuracy

• Development of standard practice for coding when no information available.

• Possible training with police/data collectors.


Thank You

Questions