MINIMUM DATA SET

One of the measures in the Cancer Australia’s Evaluation framework of all National Cancer Collaborative Trials Groups (CCTGs) is to demonstrate the participation of patients from private sector sites, non-metropolitan locations, Aboriginal, Torres Strait Islander and Culturally and Linguistically Diverse backgrounds in clinical trials.

As such, all CCTGs are required to collect a minimum demographic dataset.

Cancer Australia has provided the following justification statement regarding the collection of the minimum data set, which can be used in the National Ethics Application Form

(suggested for the section which asks: ‘List ALL research personnel and others who, for the purposes of this research, will have authority to use or have access to the information and describe the nature of the use or access‘):

 

“As part of the Australian Government’s commitment to rural and remote, Aboriginal and Torres Strait Islander (ATSI) and Culturally and Linguistically Diverse (CALD) health, it is requested that the Multi-site Collaborative National Cancer Clinical Trials Groups which Cancer Australia funds record for each clinical trial participant: post code, ATSI status, country of birth, and language spoken at home. 

These populations have distinct issues relating to cancer, for example increased incidence of specific co-morbidities, difficulties in treatment adherence and delays in diagnosis. This information will allow for improved understanding of the study population and the coverage of clinical trials. Only summative information on remoteness, ATSI and CALD status will be reported from this data in order to protect individual’s identities.

In the future the collection of this information, subject to additional ethics approval, will also enable the aggregation of data across trials, allowing further research into specific issues relating to these at risk populations.”

 

The recommended questions and coding instructions for this minimum data set are described below and have been derived from the National Health Data Dictionary (NHDD) V15 and Australian Bureau of Statistics (ABS).

 
  1. Accessibility/Remoteness Index of Australia (ARIA) 
  2. Aboriginal and Torres Strait Islander (ATSI) status 
  3. Language spoken as a child
  4. Main language other than English spoken at home 
  5. Country of birth 
  6. Age group
  1. Accessibility/Remoteness Index of Australia (ARIA)

Postcode data or suburb/state data can be mapped to the Accessibility/Remoteness Index of Australia (ARIA). At a minimum, PoCoG studies are required to collect study participant’s 4-digit postcodes either as part of an address line or separately. Overseas addresses, unknown addresses, or where there is no fixed address, the variable is to be left blank. The postcodes are then used to derive ARIA code. Alternatively, researchers may opt to collect both the suburb and state from each study participant for a more accurate calculation of ARIA codes.

If postcode, or suburb and state, are not collected as part of the address line, you may wish to use the questions below:

What is the postcode in which you live?
 

OR

What suburb do you live in?
 
What state do you live in?
 

Coding instructions

ARIA code classifications can be calculated using ARIA LookUp Tool available from the PoCoG Executive Office.
Please contact the office to make arrangements.

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  1. Aboriginal and Torres Strait Islander (ATSI) status

The NHDD uses the following coding for indigenous status:

  1. Aboriginal but not Torres Strait Islander origin
  2. Torres Strait Islander but not Aboriginal origin
  3. Both Aboriginal and Torres Strait Islander origin
  4. Neither Aboriginal nor Torres Strait Islander origin
  5. Not stated/ Unknown

It is recommended that the data be collected using the following question format:

Are you of Aboriginal or Torres Strait Islander origin? (For persons of both Aboriginal and Torres Strait Islander origin, mark both ‘Yes’ boxes.)
 
 
No
 
 
Yes, Aboriginal
 
 
Yes, Torres Strait Islander

Coding instructions

Participant marks ‘Aboriginal’ – code 1
Participant marks ‘Torres Strait Islander’ – code 2
Participant marks ‘Aboriginal’ and ‘Torres Strait Islander’ – code 3
Participant marks “no” – code 4
Participant does not answer - code 9

Coding conflicting responses

Participant marks ‘No’ AND ‘Aboriginal’ – code 1 (i.e. disregard the ‘No’ response)
Participant marks ‘No’ AND ‘Torres Strait Islander’ – code 2 (i.e. disregard the ‘No’ response)
Participant marks all three boxes - code 3 (i.e. disregard the ‘No’ response).

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  1. Language spoken as a child

The suggested wording for this question is:

Which language did you first speak as a child?
 
 
English
 
 
Other. Please specify:________________________

 

Coding instructions

‘English’ responses are coded as ‘1’ and ‘other’ responses are coded as ‘0’. Should specific languages need to be coded, please refer to the 4-digit standard international coding system which can be obtained from the ABS.

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  1. Main language other than English spoken at home

The suggested wording for this question is:

Do you speak any languages other than English at home?
 
 
Yes. Please specify:________________________
 
 
No

Coding instructions

As per convention, ‘yes’ responses are coded as ‘1’ and ‘no’ responses are coded as ‘0’. Should specific languages need to be coded in the future, please refer to the 4-digit standard international coding system which can be obtained from the ABS.

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  1. Country of birth

The suggested wording for this question is:

In which country were you born?
 
 
Australia
 
 
Other. Please specify:________________________

Coding instructions

PoCoG recommends coding ‘Australia’ as ‘0’ and ‘Other’ as ‘1’. Should specific countries need to be coded in the future, please refer to the 4-digit standard international coding system which can be obtained from the ABS.

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  1. Age group

Age Group needs to be categorised as follows (the AYA 15-25 and >75 age groups need to be recorded in particular)

Age Group
0-14 years
15-25 years
26-50 years
51-75 years
≥ 76 years