Information for the general public
We are committed to using the findings from the NSW-CDS to improve the mental health and wellbeing of Australian children and adolescents. We recognise that members of the public often have questions about record linkage and privacy, which we endeavour to address below.Ìý
What is record linkage and how is your privacy protected?
Record linkage allows researchers and policymakers to study trends and patterns in populations by bringing together routinely collected information from different sources. When linkage is conducted, an individual’s records from different agencies are brought together by a third party and provided to the researchers in a way that protects anonymity (that is, without personally identifying any individual so that privacy and confidentiality are protected). It provides a safe and secure way to bring together relevant information that enables researchers to examine relationships between certain events in the population.
Because of the power provided by large population samples, record linkage is often used to answer research questions that cannot be studied accurately in smaller samples (where outcomes of interest may be rare, and therefore require large numbers of individuals for these events to occur at all). Of equal importance, sometimes the use of administrative records can be useful when self-reported information (i.e., via interviews or questionnaires) may be biased by memory recall, or simply not feasible to collect (for whole populations).
For example, using record linkage, health services information for an entire population can be combined with information from other departments or agencies, such as education, to study questions that could not be answered using any other research methodology.
Record Linkage can also bring together the records of a child with those of their parents so that important intergenerational influences in the child’s life can be considered. For example, significant events in the parents’ lives (such as hospitalisation for serious illness or time away from the family during incarceration) might impact offspring health and wellbeing in concurrent or later years of development. The extent of intergenerational information able to be considered via record linkages could not be gathered accurately for a population cohort in any other way. We are fortunate that the NSW and Commonwealth Governments have provided the infrastructure to enable this research to be undertaken in a way that protects the privacy of the people involved.
How is record linkage conducted?
The record Linkage processes are governed by strict privacy and confidentiality protection laws, so that each individual’s identity and data is protected. The research team do not know the individual identity of the children or parents in the linked data sets. The Centre for Health Record Linkage (CheReL) which is NSW’s state-based record linkage authority, provide an excellent outline of the stages of the record linkage process including videos. Please see “.
Who gives permission for records to be linked?
Before any record linkage projects can be undertaken, multiple approvals are required to ensure that all Commonwealth and State privacy and security regulations and laws are upheld, that the research is of significant scientific merit (that is, it asks important and relevant questions), and that there is no risk that an individual may be personally identified at any stage of the research.
The following approvals must be obtained before a record linkage project can be undertaken:
- An authorised Human Research Ethics Committee (e.g., the NSW Population and Health Services Research Ethics Committee) must approve the linkage project, and will set an expiry date by which the record linkage project must be completed;
- Data Custodians within the organisation responsible for each dataset must approve the use of their data for the purposes of the linkage project;
- The Record Linkage Integrating Authority (e.g., in NSW this is the Centre for Health Record Linkage) must approve the feasibility of the linkage project;
- ÌýAll government-owned data must be approved for linkage by the relevant Department’s own ethics committee.
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Support Us
The NSW-CDS currently relies on competitive research scheme funding; any philanthropic donations are greatly appreciated. If you would like to support the NSW-CDS through a donation to help us to continue this important research focused on improving the mental health and wellbeing of young Australians, please contact the study lead Melissa Green.
NSW-CDS Research findings
To make our research findings accessible to the public, lay summaries for each scientific publication arising from the NSW-CDS are available in the findings section of this website. We regularly provide presentations of our research findings; please contact us if you would like us to present to your community group.Ìý