National Aboriginal and Torres Strait Islander Health Measures Survey (NATSIHMS) Collection Notice

This Collection Notice explains the collection of personal information in the
National Aboriginal and Torres Strait Islander Health Measures Survey (NATSIHMS).

The Australian Bureau of Statistics (ABS) collects personal information for different purposes. The ABS has a Privacy Policy for Statistical Information as well as a specific Privacy Impact Assessment, which provides more details about how personal information is protected for this survey. These are available on the ABS website at www.abs.gov.au/privacy

Your personal information is being collected from you or your Parent/Guardian/Legally Authorised Representative to be used by the ABS and Sonic Pathology Australia. If you choose to provide samples at a participating Health Service, they will also collect your personal information.

If you agree to participate in the voluntary collection, you will be asked to provide a referral form containing personal information including health conditions and current medications to a Sonic Pathology Australia collection centre or a participating Health Service.  You will also be asked to provide a blood and/or urine sample, depending on your age.  If you are under 18 years of age the referral form may be completed by a guardian but will need to be signed by yourself and your guardian.

A set of tests will be run by Sonic Pathology Australia on the samples and results of the tests collected by the ABS. If you consented, a copy of your results will also be sent to your doctor.

For the NATSIHMS, the ABS, Sonic Pathology Australia, and participating Health Service (if you choose to attend a Health Service), will collect, and hold different kinds of personal information about you.

• name (if you are 17 years and under, this includes the name of your Parent/Legal Guardian/Legally Authorised Representative)
• age
• sex
• postal address
• email address
• contact phone number
• sensitive personal information such as health conditions, current medications, Doctors details and test results.

We collect personal information to create statistics about the health of Australians. These statistics inform important decisions relating to health policy and delivery of services across Australia.

The purpose of the NATSIHMS is to collect additional information from study participants on selected biomedical markers of chronic disease and nutrition.

The ABS is committed to maximising the value of data and statistics. To do this, we also collect personal information to link between your answers to National Aboriginal and Torres Strait Islander Health Survey  (NATSIHS) or the National Aboriginal and Torres Strait Islander Nutrition and Physical Activity Survey (NATSINPAS), your test results and other administrative sources. This is known as data integration, and information about you is not identifiable throughout this process. For more information about this process, see the Data integration page on the ABS website. 

We also collect personal information to help us run the NATSIHMS. This personal information is used to make communicating with you easier, including reminders and the provision of the gift card reimbursement.

Your personal information is collected by Sonic Pathology Australia to facilitate the testing and management of your blood and urine samples. This information may also be used to provide information about unexpected test results to you, and if you agree, to your nominated doctor.

Personal information received by Sonic Pathology Australia is managed in line with the Sonic Pathology Australia Privacy Policy and the Privacy Act 1988.

Your personal information is collected by participating Health Services to facilitate the collection of your blood and urine. This information is provided to Sonic Pathology Australia to facilitate the testing and management of your samples.

If you are providing your samples at a participating Health Service, none of your personal information is kept by them, unless you are a current patient or elect to become a patient, and agree to have the results of your NATSIHMS tests provided to them.

The ABS will keep:

• names and addresses for up to 36 months.
• Information we collect to run the NATSIHMS no longer than the collection period, which should end by June 2024.

Sonic Pathology Australia will keep:

• Names and address indefinitely.

Sonic Pathology Australia will destroy or permanently de-identify any personal information that is no longer needed for the purpose for which it was collected, provided they are not required, under relevant accreditation standards or an Australian law, to retain the information.

The information collected is a medical result which may be used as part of a clinical diagnosis, if the results are outside the normal range for the test. Sonic Pathology Australia maintains electronic information on names and addresses, to enable them to match against hard copy test results if they are required to do so. 

Participating Health Services:

No personal information is kept by participating health services once provided to Sonic Pathology Australia, unless you are a current patient or elect to become a patient and agree to have the results of your NATSIHMS tests provided to them.

The ABS will:

• only share information that does not identify you with approved researchers and will only do this in a safe way.

The ABS will not:

• share information in a way that would identify anyone (our legislation does not allow this)
• share information with private organisations, such as direct marketing companies
• share data with other government agencies for compliance or regulation activities. Our Privacy Policy outlines the penalties for ABS employees who fail to protect your data.

Sonic Pathology Australia will only share your personal information with the ABS and, with your consent, your doctor.

The participating Health Service will only share information with Sonic Pathology Australia.

Unlike other compulsory ABS surveys, the NATSIHMS is voluntary and requires your consent to participate. It will not be an offence under section 14 of the Census and Statistics Act 1905 to not participate in the NATSIHMS. Further, consent to participate in the NATSIHMS can be withdrawn by a participant at any time by contacting the ABS on 1800 225 437. Deidentified information already collected may continue to be included in the survey.

Sonic Pathology Australia has been contracted by the ABS to provide pathology services for the NATSIHMS. With your consent, Sonic Pathology Australia will collect personal information from you, including sensitive information, in accordance with the requirements of the Privacy Act 1988.

Participating health services have signed a memorandum of understanding (MOU) agreement to collect samples for the NATSIHMS. With your consent, they will collect personal information from you, including sensitive information, in accordance with the requirements of the Privacy Act 1988.

With your consent, the ABS will collect personal information from Sonic Pathology Australia under the authority of the Census and Statistics Act 1905. 

Data integration is a method of bringing together information from different sources about the same person.

To use the information from your blood and urine test results for health reporting, the ABS must link this to your survey information. This information may also be combined with other administrative data in the Multi-Agency Data Integration Project (MADIP) to inform further health and wellbeing research. Research using this information is subject to rigorous governance processes as outlined on the website Keeping integrated data safe here: www.abs.gov.au/about/data-services/data-integration/keeping-integrated-data-safe.

For operational reasons, we cannot ask you to consent to data integration as a separate component to providing biomedical samples in the NATSIHMS. When you consent to the NATSIHMS, you are consenting to provide both biomedical samples and to have the results from these linked to other data, to maximise the value from the information. An example of this would be linking measures of high cholesterol from your blood sample and number of visits to the GP to manage heart conditions. If you do not wish to have your data linked, please do not consent to participate in the NATSIHMS. You can withdraw your consent at any time by contacting the ABS on 1800 482 517.

The ABS will not disclose your personal information to any organisation located overseas. When personal information gathered / used to help run the NATSIHMS is stored in the cloud, it is kept in Australia.

Contact the ABS Privacy Officer using the details provided below if you need to access or correct personal information collected about you in relation to the NATSIHMS. If the personal information you provided in the NATSIHMS changes, you can contact the ABS on 1800 225 437.

The ABS Privacy Policy for Statistical Information has information about how to make a complaint if you feel we have not adequately protected your privacy. The Policy describes how we will respond to your complaint, and what you can do if you are not satisfied with our response.

You can contact the ABS Privacy Officer (details below) who will respond to your enquiries or assist with complaints.

By email: privacy@abs.gov.au

By post: ABS Privacy Officer
Australian Bureau of Statistics
Locked Bag 10, Belconnen ACT 2617

The Aboriginal Health Research Ethics Committee (AHREC) has reviewed and approved this survey in accordance with the National Statement on Ethical Conduct in Human Research (2007) – incorporating all updates. This Statement has been developed to protect the interests of people who agree to participate in human research studies

Should you wish to discuss the survey with someone not directly involved, particularly in relation to matters concerning policies, information or complaints about the conduct of the survey or your rights as a participant, or view a copy of the Complaint procedure, you may contact the Manager, Research and Ethics at:

Email: Gokhan.Ayturk@ahcsa.org.au

Website: www.ahcsa.org.au/contact/contact-us/