Please consider the following before applying for linked health record data.
Scope and content of collections
Before applying for linked data, you should familiarise yourself with the scope, content and context of each collection. Linked data users must have the appropriate skills and expertise to work with complex health data. We strongly recommend that researchers use ALSWH derived variables, where available; see CCMS datasets (Chronic Conditions from Multiple Sources) below.
Please note that ALSWH only receives a selection of variables from any given record collection. See ALSWH linked data pages, and the ALSWH Linked Data Variable Request Form for more information. Additional resources will also be provided to investigators along with the linked datasets.
Linked data will not be immediately available to new users. After approval of your project by the ALSWH Data Access Committee, you will need to complete additional documentation, which will be submitted to Human Research Ethics Committees (HRECs) and Data Custodians by ALSWH on your behalf. Depending on the number and sources of linked datasets requested, this process may involve multiple steps, and can take several months (particularly for state-based collections). While we make every effort to expedite access, it is outside of ALSWH control. We are currently experiencing some additional delays due to the prioritisation of COVID-19 data needs by data custodians, data linkage units and ethics committees. The ALSWH Linked Data Variable Request Form (follow link in table, above left) includes a guide to current approval times for each data collection.
Chronic conditions datasets from multiple sources (CCMS)
To streamline your analyses, ALSWH has developed some derived datasets to share. These datasets identify common chronic health conditions (such as dementia, heart disease, diabetes and cancer) from all available sources (both surveys and linked health records). The task of harmonising the numerous sources, and ascertaining relevant diagnoses, has already been done, and the methods documented and validated. For many analyses, this level of information may be sufficient, rather than using the source data. Access requirements are the same as for other linked data collections. The methodology for creating these datasets has been described in the ALSWH 2020 report to the Australian Government Department of Health.
Access to linked data
For projects involving linked data, an ALSWH Project Liaison must be included in the project as a collaborator, and as an author on any publications. This requirement is due to the complexity of the data and ALSWH’s responsibilities to the data custodians.
Linked data for approved projects can only be accessed and analysed:
- At ALSWH sites: The University of Queensland or The University of Newcastle. Visits must be booked; access depends on the facilities and resources available.
- Remotely through the SURE facility, at the researcher’s expense.
ALSWH participants may opt out of health record linkage at any time, and will no longer be included in lists sent to Data Linkage Units for matching. When you access linked datasets, you will receive a file including all ALSWH participants, indicating their opt-out status at that time. When you conduct your analysis it is important to consider why a woman’s data do not appear in the linked dataset, and the potential for under representation.
Certain variables, for example, geographic variables (such as Statistical Local Area, Health Service District, and postcode) are more sensitive, and there are additional restrictions around their use. If you wish to include sensitive variables in your project, they must be adequately justified in your EoI. Before being integrated with your project dataset, they must be coded or categorised, and sufficiently aggregated, to minimise risks to participant privacy.
Alternatively, ALSWH routinely supplies commonly-used geographic variables derived from participant geo-codes (e.g. ARIA+, SEIFA) which are sufficient for many analyses.
Acknowledgement of sources
Details of the official collection names and the organisations involved in data linkage are listed on the ALSWH linked data acknowledgements page.
Specific acknowledgement text to be included in publications arising from linked data is also provided for collaborating researchers.
ALSWH data linkage program approvals
ALSWH has approval to conduct health record linkage from its Institutional Human Research Ethics Committees (HRECs), and from the responsible HRECs and data custodians in every jurisdiction.