Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

No

Description of data collection

This project utilises the linkage of administrative health records from the Commonwealth of Australia, linked with administrative health records from the New South Wales Ministry of Health.
Event triggering registration

Event triggering registration of a person in the data source

Birth
Other
Residency obtained

Event triggering registration of a person in the data source, other

Enrolment in Medicare (Australia's universal healthcare system). Includes birth and immigration.

Event triggering de-registration of a person in the data source

Death
Emigration
Other

Event triggering de-registration of a person in the data source, other

Medicare enrolment address updated to be out of NSW (interstate or international emigration).

Event triggering creation of a record in the data source

Hospital separation, medicine dispensing at community pharmacy, death notification, cancer notification, claim for Medicare funded service (e.g. GP or specialist consultation; pathology test)
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

Yes

Linkage description, pre-linked

The linkage was conducted by the Australian Institute of Health and Welfare (AIHW) and the NSW Centre for Health Record Linkage (CHeReL). Deterministic linkage of the Commonwealth MCD, PBS, MBS and HP datasets was combined with probabilistic linkage to the NSW datasets APDC, EDDC and NSWCR. The separation principle was applied throughout in that no health/content data are used in this process.

Linkage description, possible linkage

The linkage was conducted by the Australian Institute of Health and Welfare (AIHW) and the NSW Centre for Health Record Linkage (CHeReL). Deterministic linkage of the Commonwealth MCD, PBS, MBS and HP datasets was combined with probablistic linkage to the NSW datasets APDC, EDDC and NSWCR. The separation principle was applied throughout in that no health/content data are used in this process.

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Medicare Consumer Directory (MCD)

Linkage strategy

Deterministic

Linkage variable

Statistical linkage keys as part of the Master Linkage Keys held by the AIHW and the NSW CHeReL data linkage units. For more information on these linkage keys see https://www.aihw.gov.au/our-services/data-linkage and https://www.cherel.org.au/datasets

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 2

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Pharmaceutical Benefits Scheme (PBS)

Linkage strategy

Deterministic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 3

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Medicare Benefits Schedule (MBS)

Linkage strategy

Deterministic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 4

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

National Death Index (NDI)

Linkage strategy

Deterministic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 5

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

NSW Admitted Patient Data Collection (APDC)

Linkage strategy

Probabilistic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 6

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

NSW Cancer Registry (NSWCR)

Linkage strategy

Probabilistic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 7

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

NSW Emergency Department Data Collection (EDDC)

Linkage strategy

Probabilistic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 8

Pre linked

Is the data source described created by the linkage of other data sources?

Yes

Data source, other

Herceptin Program (HP)

Linkage strategy

Deterministic

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)

Linked data source 9

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

Other data sources available through the NSW Data Linkage Unit (CHEREL) or AIHW

Linkage strategy

Deterministic

Linkage variable

Statistical linkage keys as part of the Master Linkage Keys held by the AIHW and the NSW CHeReL data linkage units. For more information on these linkage keys see https://www.aihw.gov.au/our-services/data-linkage and https://www.cherel.org.au/datasets

Linkage completeness

This project makes use of the National Master Linkage Key, a map between Commonwealth and NSW datasets. This linkage was conducted by the AIHW and obtained a 95% linkage rate (around 10.5 of 11 million persons). (False positive rate of 5/1,000 people)
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

No

Data source preservation

Are records preserved in the data source indefinitely?

No

Data source preservation length

5 years

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No