What type of data is used?
Throughout our lives information about us is routinely collected by government departments and other agencies. Many of our life experiences from the moment we are born until our death generate data that is collected and used for a range of purposes. For example, information is routinely collected when you visit a hospital, when you get married or divorced, when you have a child or when you are diagnosed with an infectious disease or with cancer. This information is collected via departments and agencies such as public hospitals, state and territory health departments, and Births, Deaths and Marriages registries. It includes information on hospital admissions, births and deaths, cancer and infectious diseases.
Within Australia there are numerous population-based databases routinely collecting data on a broad range of events. These data can be categorised as administrative data or project specific datasets. Data linkage units obtain data from these pre-existing datasets and maximise their use. It is important to note that data linkage units do not collect data directly from individuals or instigate the collection of data.
Administrative datasets is the term given to those data collections that are made up of information that is routinely collected during the delivery of a service (Davies, Barnes and Dibben 2010). These data are collected via departments and agencies and used for policy, planning, management, monitoring, evaluation and research purposes.
The collection of administrative data, is generally required or authorised by law. Typically mandatory reporting requirements allow this data to be collected from health care providers without patient consent (Allen et al, 2013).
Administrative datasets usually contain both identifiable information and content information relating to individuals. It is important to note that the content information recorded in administrative datasets is only summary information (i.e diagnosis, date of admission and treatment) as opposed to the much more detailed patient records used in the provision of patient care (Allen et al, 2013).
The information is stored in secure data collections within each agency and all access to the data is controlled by a data custodian (an authorised nominee of the agency who holds the data).
Key features of administrative data
- Collected during service delivery
- Without consent
- Collection mandated by statute
- Used by government agencies for planning, monitoring and funding
Examples of administrative data collections
- Births Registry
- Emergency Department Data Collection
- Admitted Patient Data Collection
- Cancer Registry
- Death Registry
Project Specific Data Collection
Additionally, governments and other agencies may collect information from time to time for a particular purpose such as a survey of health behaviours or a specific research project. Subject to relevant approvals, researchers can request Data Linkage Units to link these data with administrative data and or other project specific data collections.
Key features of research data collections
- Collected for research
- With consent
- Sometimes includes consent for access to other information
Examples of research data collections
A full list of administrative and research data collections that are routinely linked is available here.
Allen, J., Holman, CDJ., Meslin, EM. and Stanley, F. (2013). Privacy protectionism and health information: is there any redress for harms to health? Journal of Law and Medicine. 21. 473-485
Davies, J., Barnes, H. and Dibben, C. (2010) Education administrative data: Exploring the potential for academic research. St. Andrews: Administrative Data Liaison Service. Available online: http://www.adls.ac.uk