USEFUL RESOURCES

Governance Legislation / Regulations

Ethics Committees

Research in Australia involving people requires Ethical review and approval.

The Australian Code for Responsible Conduct of Research was developed and endorsed through Australian Research Council (ARC) and the National Health Medical Research Council (NHMRC), with responsibilities and practices in accordance with Section 95 of the Privacy Act, 1988 (Cth).

The following are the 'peak' ethics bodies that linked data use is approved through:

SA Health Human Research Ethics Committee (SA HREC)

SA Aboriginal Health Research Ethics Committee (AHREC)

Northern Territory Human Research Ethics Committee (NT HREC)

Australian Institute of Health & Welfare (AIHW Ethics)

Other Resources

About the SA NT DataLink Custodian Controlled Data Repository (CCDR)

Population Health Research Network (PHRN)

Free online researcher training module to help researchers better understand linked data and navigate the access and approval process.
Data Collections: Metadata Platform

Australian De-Identification Decision-Making Framework (2017) describes constructive approaches for considering safe data access of de-identified 'sensitive' unit record level data, to manage the risk of re-identification and unauthorised disclosure.

The Scottish Data Linkage System includes near real-time harvesting of records from the nationwide Scottish Health and Community Services operational systems, faciliating the analysis and research on de-identified data that is securely stored in a federated network of 'safe data havens'. There is a useful diagram published in the journal on Public Health Res Pract. 2015;25(4):e2541541 Pavis S, Morris AD. Unleashing the power of administrative health data: the Scottish model.

Professor Andrew Morris, as the Scottish Chief Scientist and Dean of Medicine at Edinburgh University spoke at the SAHMRI Research SA NT DataLink Researcher Conversation event in Adelaide in 2015 - with his one hour insightful talk on the Scottish Data Linkage model available on youtube.

Community and Consumer Engagement in Research - Handbook deveoped in WA, March 2008

Peter Christen (2012) Data Matching - Concepts and Techniques for Records Linkage, Entity Resolution, and Duplicate Detection

Instructional video on Privacy Protection for Population Studies involving Genomic / DNA data

Vanderbilt University Medical Center have prepared an instructional video describing the privacy protection methods when using Genome-Wide Association Studies (GWAS). The video provides useful information and assessment of privacy protecting process where Genomic / DNA data is linked with other records, and the situations where privacy may be compromised and a case study showing steps to manage this.