Supporting Health, Education, Social, and Economic Research and Policy in South Australia and the Northern Territory

Delivering high quality linked data for evidence-based research and policy evaluation

USEFUL RESOURCES

Governance Legislation / Regulations

Data Availability and Transparency Act 2022 (Cth)

The Privacy Act 1988 (Cth) Privacy Principles.

Public Sector (Data Sharing) Act 2016 (SA)

Privacy Commitee of South Australia - Privacy Principles.

Information Act 2002 (NT)

 

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 Health HREC)

Aboriginal Health Council of South Australia (AHCSA) - temporarily closed

Northern Territory Ethics Committee - Menzies School of Health Research

Australian Government - Australian Institute of Health & Welfare (AIHW Ethics)

 

Other resources

Information Flyer - on the SA NT DataLink Custodian Controlled Data Repository (CCDR)

More detailed explanation of the Custodian Controlled Data Repository (CCDR)

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.

Access and use of Australian Government Data for Integration and Linkage is governed by a set of high level principles for statistical integration which were endorsed in February 2010. To date three Commonwealth Agencies have been accreditated as 'Integrating Authorities', ABS, AIHW and the AIFS. SA NT DataLink have applied to be accrediated and are awaiting approval to be considered as a 'Safe Trusted third party' able to integrate SA/NT and Commonwealth Govt data.

In addition, the set of governance and institutional arrangements for data integration, were endorsed by the Australian Government in October 2010.

Population Health Research Network (PHRN) provide a useful description - About Data Linkage

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

The South Australian Early Childhood Development Research Group at the University of Adelaide is an important research program for South Australia analysing data on over 300,000 children (whole of population) and their education, youth justice and health outcomes. This is led by Professor John Lynch -  please refer to a useful one page diagram of the linked data presented in March 2017

STATA Statistical Software Package http://www.flinders.edu.au/medicine/sites/fceb/workshops/

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

There is a critical need to ensure that research and data linkage methods involving studies using the Genomic / DNA data protect the privacy of individuals. There are a combination of privacy protecting anonymising and suppression steps that need to be considered when undertaking research; particulary where there are a small numbers of results.

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. 

Standard Glossary of Terms & Abreviations PHRN Glossary, as at Sept 2011