Data linking explained
How, and why, is my data linked with other data?
Improving health and healthcare services
Records such as Medicare, hospital, death and disease registers, and aged care datasets are linked for this Study. These records provide administrative and classification information on health events, medical conditions, treatments and medications, and services used. This wider perspective allows us to examine the entire patient journey through the health system, finding answers which we could not get from survey data alone. For example, by putting Medicare data together with survey data, we can investigate how women’s access to health services is affected by where they live. For other examples, see the stories in this newsletter on endometriosis and aged care.
How are records linked?
Your privacy is a priority. Records provided to the Study are subject to strict privacy and confidentiality regulations. Dedicated Data Linkage Units match and de-identify records. They do not have access to your survey answers. Your name and contact details are not included with the information we receive. The researchers and project staff who analyse your data also sign confidentiality statements. This process is approved by the responsible Human Research Ethics Committees.
We have previously asked for your consent to health record linkage. These records are now regularly provided without your needing to consent every time. If you wish to opt-out of this method of data collection, please contact the Study (see below). You can keep doing our surveys, and receive these newsletters, even if you opt-out of data linkage.
‘Til death do us part…
Because date and cause of death are essential in the analysis of health outcomes, we have approval from our Human Research Ethics Committees to check the National Death Index for everyone who has participated in the Study. This also avoids distress for relatives who may receive survey reminders for people who have passed away.