No information will be disclosed to overseas recipients.
1. Personally identifying information
Contact information of family members or alternate contacts is also collected for the purpose of keeping in touch with the participant. This information is provided by the participants on the consent form, or in the course of an online survey.
The project may also access registers such as the National Death Index and the Electoral Roll to locate participants in cases where contact with a participant is lost.
Participant lists containing names and addresses may be securely and confidentially provided to other agencies, solely for the purposes of conducting this study. These uses are strictly regulated and limited to:
- Mailing contractors, who perform bulk mail-outs of surveys and study newsletters
- Dedicated state and national health department Data Linkage Units, who link and de-identify information from your health records, so that it can be analysed with survey data as part of this study. Read more in the data linkage section of this website.
- Bonafide research collaborators may receive approval to contact participants for substudies. Read more… (link to substudy info). Other than this use, researchers only have access to de-identified data.
Hard copy consent forms are separated from surveys and stored at the University of Newcastle’s offsite secure storage facility. Forms will be stored for a minimum of five years after the completion of the project, in accordance with national ethical guidelines. Medicare consent forms are maintained by the Department of Human Services in accordance with their own requirements.
All electronic copies of consent forms are stored in folders on secure servers. Access to these folders requires ID and password authentication. Only ALSWH project staff at the University of Newcastle with specific permission and who have signed confidentiality agreements are permitted access to this information.
2. De-identified information
You can view copies of the main surveys distributed to participants on the surveys page.
The contact details page is separated from completed paper surveys and entered into the participant database. Once the scanned copies of surveys are checked, the hard copies of surveys are destroyed, in accordance with Human Research Ethics Committee requirements. Scanned survey files are stored electronically in protected folders on secure servers accessible only to approved staff.
The de-identified survey data captured from online and paper surveys is stored in the research database, separately from participant contact information. For extra privacy protection, different ID numbers have been assigned to these two databases, with the key between the two sets of IDs limited to a small number of senior staff. Copies of de-identified survey datasets are also archived electronically at the Australian Data Archive (a national repository for the curation of research data assets).
Unless a participant has explicitly informed ALSWH that they do not want us to access data relating to them from other external sources, information is also collected from:
- Medicare Benefits Schedule (MBS)
- Pharmaceutical Benefits Scheme (PBS)
- Australian Immunisation Register (AIR)
- Aged Care datasets
- Hospital admissions datasets
- Cancer registries
- Emergency departments
- Perinatal datasets
This list of data collections may expand over time, and may include past information (for example, Medicare records go back to 1984; see national and state collections for details). Linkage to these data collections is conducted by dedicated external Data Linkage Units, so that ALSWH researchers only receive anonymous datasets. A list of the organisations involved is available here.
Because date and cause of death are essential outcomes for our study, we also have approval from our Human Research Ethics Committees to check the National Death Index for everyone who has participated in ALSWH. This work is done by the Australian Institute of Health and Welfare.
Data linking is explained here.
If you have concerns about our methods of data collection, need more information, or wish to opt out of record linkage, please contact the Study.
To optimise the outputs from this long-running, nationally significant study, de-identified research data may be shared with external collaborators. All researchers must submit a formal application to the ALSWH Data Access Committee and agree to their terms and conditions. Full information about this process is available here: Applying for data.
3. Data retention and disposal
In accordance with national guidelines (the Australian Code for the Responsible Conduct of Research; Section 2.3 of ‘Management of Data and Information in Research’) information will be securely retained for at least five years after this study closes. Please note, that subject to ongoing funding, we expect this study to continue for many more years into the future. However, after the closure of the study and the mandatory retention period, all personally-identifying information (such as names, dates of birth and contact details) will be securely destroyed.
De-identified survey data will continue to be maintained in the Australian Data Archive. Arrangements will also be made at this time about the linked health record data provided to us, for the duration of the study, by national and state governments. At the discretion of the agency which provided the data, it will either be included in the non-identifiable archive, or securely destroyed.
4. Participant contacts
If you have concerns about your privacy, need more information, or wish to opt out of record linkage, please contact the study.
- Freecall: 1800 068 081
- Email: firstname.lastname@example.org
If you would prefer to discuss this with an independent person, you can contact:
- The Human Research Ethics Officer, Research Branch, The University of Newcastle, University Drive, Callaghan, NSW 2308, Ph: 02 4921 6333
- The Human Research Ethics Officer, The University of Queensland, St Lucia, QLD 4072, Ph: 07 3365 3924
- Office of the Australian Information Commissioner https://www.oaic.gov.au/