Dat Linkage Frequently Asked Questions
Join Us also has the ability to securely link your personal details with routinely collected health data to help with research. Linking routinely collected data provides additional information to researchers, providing a powerful way to create more detailed datasets that can help address difficult health questions.
Researchers are only provided with access to de-identified data that cannot be linked to personal information such as your name or email address.
Information on how data linkage is done, what datasets are linked and how your data is stored and kept secure can be found in our FAQs below.
About Data Linkage with Join Us
The Join Us data linkage option will:
- Collect and hold one additional identifying personal detail: your street address.
- Match your identifying personal details to your electronic health records.
- Store your de-identified electronic health records.
- Allow researchers to use your de-identified electronic health records to try and answer future research questions.
Your de-identified electronic health record data may also be used to enable more precise matching of you to research studies that you may be interested in joining.
Your participation in the Join Us data linkage option is completely voluntary and there will be no cost to you. You should feel under no obligation to participate.
If you decide to participate in the Join Us data linkage option, you will need to:
- Read this Data Linkage Participant Information Statement.
- Agree to your identifying personal details, including your street address, being used to identify your electronic health records held by the Australian Institute of Health and Welfare and other health service providers.
- Allow a copy of your electronic health records to be stored in a de-identified format by the Join Us register for use in approved research studies and to enable more precise matching of you to research studies that you may be interested in joining.
- Complete and submit the Consent Form.
Yes, you can withdraw from the register at any time and do not need to give a reason for your withdrawal.
If you withdraw from the data linkage option, you will be able to choose whether the register will destroy or retain the information it has collected about you already. It may not be possible to withdraw information already used for research or publication. You will need to directly contact the research coordinator or study team of the research study you participated in regarding withdrawal of your consent and/or information.
You can withdraw from the register by:
- Completing the electronic form for Withdrawal of Participation;
- Calling us (02) 8052 4798; or
- Emailing us [email protected]
The Join Us data linkage option will connect to a variety of databases that hold a broad range of health information. This information is routinely collected by governments and other health care providers. Data sources will include but are not limited to the Australian Institute of Health and Welfare; the National Death Index; the Registry of Births, Deaths and Marriages; admissions to hospitals; attendances at emergency departments; and pathology services.
The ability to do data linkage is expanding and we may extend future data collection to records that are not yet available. For example, it is not currently possible to link data from the electronic health record held by your general practitioner, but this might be an option in the future. Before we link data from any additional source, we will always seek approval from a Human Research Ethics Committee.
Your identifying personal details (first name, last name, email address, post code, date of birth, sex and street address) will be used to identify electronic records relating to your current and past health treatments, procedures, and use of health services. Your records will be extracted from the relevant databases and a copy of your records will be stored in a secure data repository within Join Us. This data linkage process will be done several times every year and will require no further action from you. Your electronic health records held by Join Us will be de-identified by tagging them only with your unique reference number and not with your identifying personal details.
Your electronic health records may contain information that will allow researchers to better understand factors influencing your health and the health needs of the community. Researchers wanting to try and answer health research questions will discuss their study with the Join Us team to see if access to the register’s data might help address their research question.
Before providing access to your data the Join Us team will check that the study has its own human research ethics approval. For a study with approval, the Join Us team will provide the researchers with access to the Join Us database to do the approved analyses. Importantly, the access provided to the researchers is only to de-identified data that cannot be linked to identifying personal information such as your name or email address.
You will sign the consent form at the end of this document authorising the Join Us register to access your Australian Institute of Health and Welfare (AIHW) and other electronic health record information.
Providing personal information to The Australian Institute of Health and Welfare (AIHW) will enable AIHW to release information from Australian Government health records held about you. The AIHW holds valuable data on a wide range of health and welfare topics, including expenditure, hospitals, disease, injury, mental health, ageing, and more. A full list of the data collected by AIHW can be found here.
A copy of your consent form will be sent securely to AIHW and other providers who hold your health information according to their requirements. Transfer of a copy of your consent form will be done confidentially and only done to show the relevant agency that you have given us permission to access your information.
The additional identifying personal detail (street address) collected when you agree to participate in the Join Us data linkage option will be held within our industry standard, password protected, encrypted database designed to meet the privacy and security requirements of commercial, government and not for profit segments. This is the same database in which the identifying personal details you provided at initial entry to Join Us are stored.
You can contact the Join Us team by phone or email:
Telephone: (02) 8052 4798
Email: [email protected]
If you need to contact researchers who are conducting a research study you have agreed to participate in, you can find their contact details in the specific Participant Information Statement you received from that study.