Ten steps to project completion: a short guide for researchers
Linkage process summary
Links to AIHW-held and external data collections and variable lists for some of these repositories can be found within our data collections. Not all these collections are able to be linked.
The Data Linkage Unit will assist with obtaining data custodian approvals for AIHW-held data collections.
A Public Interest Certificate (PIC) is required to be signed by a delegate of the Minister for Health of the Commonwealth for the purposes of paragraphs 130(3)(a) of the Health Insurance Act 1973 and 135A(3)(a) of the National Health Act 1953. The PIC certifies that it is necessary in the public interest to divulge the requested data from Medicare (Medicare Benefits Schedule or Pharmaceutical Benefits Scheme), Centrelink or some other data collections, to the Principal Investigator.
An application for a PIC to be issued by the appropriate government department will be made by the AIHW on behalf of the Principal Investigator once AIHW Ethics Committee approval has been obtained.
Where a project requires Medicare Benefits Schedule, Pharmaceutical Benefits Scheme, Centrelink or certain other data, it is a data custodian requirement that the linked dataset must be stored and analysed within an approved secure research access environment.
Approved secure research access environments include:
The use of a secure research access environment enables release of data to researchers that otherwise would not be possible.
It is recommended that researchers make enquiries about arranging a workspace within one of these environments as soon as possible. There are costs associated with establishing secure research access environment workspaces.
All researchers wishing to access any datasets are required to sign an Undertaking of Confidentiality with the AIHW. This document describes the penalties outlined in the Australian Institute of Health and Welfare Act 1987 (section 29) relating to the unauthorised disclosure of information or attempts to re-identify study participants.
For all projects involving linkages of Pharmaceutical Benefits Scheme data to any non-standard source such as private sector or overseas data collections, additional Departments of Defence and Veterans’ Affairs Human Research Ethics Committee approval is required, unless RPBS information has been excluded.
The AIHW is a member of the Population Health Research Network, an Australian Government collaboration that has built a nationwide data linkage infrastructure capable of securely and safely managing health information from around Australia. This includes Australian Government and state and territory government data.
For multi-state linkage projects, you may choose to manage the project through the Population Health Research Network data linkage online application system.
The Population Health Research Network is an initiative of the Australian Government, conducted as part of the National Collaborative Research Infrastructure Strategy.
For prospective studies or where it is possible to contact participants, the AIHW Ethics Committee expects that, where feasible, researchers will seek written consent from participants to access their Medicare Benefits Schedule or Pharmaceutical Benefits Scheme data from the Department of Human Services.
Please contact the Department of Human Services to obtain their preferred consent form: firstname.lastname@example.org
If this pathway is taken for studies that require only Medicare Benefits Schedule or Pharmaceutical Benefits Scheme data, there is no requirement for AIHW Ethics Committee approval.
These projects are instead approved by the Department of Human Services’ External Request Evaluation Committee (EREC).
Visit the AIHW’s Australian Cancer Database (ACD) for information about this collection.
To access ACD information, researchers must seek approval from data custodians in each state and territory. Some jurisdictions also require additional ethics approvals.
Contact details for ACD data custodians.
The approval process can take more than six months, so make sure you allow plenty of time.
If other collections also need to be linked, work can begin while ACD data custodian approvals are finalised.
As the Repatriation Pharmaceutical Benefits Scheme (RPBS) is part of the Pharmaceutical Benefits Scheme (PBS), prescription information relating to Defence personnel and veterans is routinely captured in PBS data requests.
Where data about Defence personnel or veterans are to be analysed or reported separately, approval must also be sought from the Departments of Defence and Veterans’ Affairs Human Research Ethics Committee (DDVA HREC).
Please note that for studies that are not approved by the DDVA HREC, PBS extracts provided to researchers will be recoded to ensure that prescription information cannot be attributed to Defence personnel or veterans.
Approval must be sought from data custodians of state and territory admitted patient and emergency department data collections.
Some states and territories also require additional ethics approvals.
State and territory linkage units can help you with this step. State and territory linkage unit contact details.
Please contact your Project Manager (or email email@example.com) to obtain instructions for preparing and formatting your dataset.
Data files must not be sent by standard email.
Data files should be securely sent to the AIHW, using our recommended secure messaging service. Please contact your Project Manager (or email firstname.lastname@example.org) to arrange access.
The Data Linkage Unit charges for linkage work on a cost–recovery basis. We can provide a quote estimate if you contact us at email@example.com
Here are some quote examples (excluding GST):
Costs increase where:
AIHW Ethics Committee:
Sax Institute’s Secure Unified Research Environment (SURE):
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