Frequently Asked Questions
The Join Us National register is an ongoing project where data collection is currently ongoing. We collect personal details, health and demographic information. This information is de-identified and stored in secure databases at UNSW Sydney and The George Insitute.
As a participant, you will only receive invitation emails about research studies that you are matched with based on the eligibility criteria of the study and the information you had provided at the point of registration.
About the Join Us Research Register
Participation in the Join Us register is voluntary. You should feel under no obligation to participate. Choosing not to take part will not affect your current or future medical care in any way.
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 register all the information held (personal details and health and demographic data) will be destroyed. A withdrawal request will apply from the time you notify us. It may not be possible to withdraw information already used for research or publication, but you will no longer be contacted about research opportunities.
You can withdraw from the register by:
Researchers wanting help with recruiting participants will discuss their study with the Join Us team. The Join Us team will check that the study has its own human research ethics approval and then search data held within the ‘Join Us’ register for people who may match the study requirements – for example people aged between 40 and 60 who have high blood pressure.
A list of potentially eligible people will be generated and the ‘Join Us’ team will send an invitation to people in the list with information about the study. You can then consider whether you are interested in taking part. Importantly, the invitation is sent by the ‘Join Us’ team and we do not share your personal details or self-reported health and demographic information with the researchers. The researchers will only know that you have been invited if you get back to them.
Your personal details, such as name and date of birth will be held in an industry standard, password protected, encrypted database designed to meet the privacy and security requirements of commercial, government and not-for-profit segments. The system will assign a unique reference number to your personal details.
Your health and demographic information will be transferred to the University of New South Wales E-Research Institutional Cloud Architecture (ERICA) Platform. ERICA is a secure cloud computing environment that has been approved by eHealth New South Wales for data security. Your health and demographic information will be de-identified by tagging it only with your unique reference number and not with your personal details.
Storing your personal details separate from your health and demographic information is done to maximise the security of your data. The database linking your personal details to your unique reference number and your health and demographic information is only accessible to ‘Join Us’ team members with special security clearance. This arrangement ensures that no one knows which health and demographic information belongs to which person.
You will not be identifiable in published study reports and no results for individual participants will be disclosed. Additionally, your information will not be used for an unspecified purpose outside of ethically approved studies. All of your data are physically located within Australian borders.
The Join Us register is intended to be a long-term project and has no end date, with data intended to be stored indefinitely. Many health conditions take decades to evolve and treatments are often long-term, so years of data are required to answer many medical and health research questions. At any point you can request to have your data removed from the register.
If you chose to have your data destroyed, the Join Us register administrator will delete your record in the register. All health and demographic records in ERICA will be disposed of in accordance with the University of New South Wales’ Data Governance Policy.
The information you will provide is personal information regulated by Australian privacy laws. You have the right of access to personal information held about you by ‘Join Us’, the right to request correction and amendment, and the right to make a complaint about a breach of applicable privacy laws. Information on how The George Institute manages personal information can be found here. Further information about how the University of New South Wales manages personal information can be found in their Data Governance Policy and their Research Data Governance & Materials Handling Policy.
Data security is a potential risk, but privacy of information held within the ‘Join Us’ register is taken very seriously. ‘Join Us’ uses several strategies to maximise data security:
- The ‘Join Us’ register is managed by The George Institute and the University of New South Wales who are both world-leading research facilities with comprehensive procedures in place to manage sensitive health data.
- The ‘Join Us’ register will store your health and demographic information in the E-Research Institutional Cloud Architecture (ERICA) Platform. ERICA has completed the full eHealth New South Wales Privacy Security Assurance Framework review and eHealth New South Wales has formally advised that ERICA is designed with adequate security to meet the requirements of New South Wales Health. The ERICA platform has comprehensive security protocols for storage, access, quality assurance, retention and destruction of data. All ‘Join Us’ team members and researchers with approval to analyse data through ERICA will receive specific and comprehensive training.
- The ‘Join Us’ participant personal details are stored separate from the health and demographic information. In addition, the health and demographic information held by ‘Join Us’ is de-identified and comprehensive privacy-preserve protocols are in place for procedures linking personal details to the health and demographic information in ERICA.
Your participation helps make a contribution to the health of the larger Australian community. You may also have the opportunity to take part in clinical trials investigating new treatments or let your friends and relatives know about the possibility of taking part in medical research.
Any research studies you are invited to participate in via Join Us may have their own risks but these will be clearly explained to you so you can make an informed decision about taking part.
‘Join Us’ is the only research register of its type in Australia. There are other disease registries for people with specific health problems but none that are trying to engage the broader Australian community in this way. You are welcome to participate in ‘Join Us’ even if you are already involved in health and medical research in another way.
When the Join Us team matches you to an approved research study and you agree to participate, you will be informed by the researchers responsible for that study about all details of the research you participate in. This will include finding out the results at the completion of the study.
This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study should contact the Executive Officer on 02 9515 6766 and quote protocol number X21-0467.
The conduct of the biobank at the Royal Prince Alfred Hospital has been authorised by the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study may also contact the Research Governance Officer on 02 95157899 and quote protocol number X21-0467.
If you suffer any injuries or complications as a result of a research study that the Join Us register has matched you to, you should contact the study team leading that research study as soon as possible to arrange appropriate medical treatment. If you are eligible for Medicare, you can receive required medical treatment free of charge, as a public patient in any Australian public hospital.
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 Participant Information Statement you received from that study.
About Data Linkage with Join Us
The Join Us data linkage option will:
- Collect and hold additional personal details, namely your street address and Medicare number.
- Match your personal details and Medicare number 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 Participant Information Statement.
- Provide your street address and Medicare number.
- Agree to your personal details, including your Medicare number and address, being used to identify your electronic health records held by Services Australia and by the agencies or providers of the Commonwealth government, State governments or Territory governments 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. A withdrawal request will apply from the time you notify us but it may not be possible to withdraw information already used for research or publication.
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 Medicare Benefits Scheme; the Pharmaceutical Benefits Scheme; 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 personal details (first name, last name, email address, post code, date of birth, sex, street address and Medicare number) 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 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 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 Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and other electronic health record information. Medicare collects information on your doctor visits and the associated costs, the Pharmaceutical Benefits Scheme collects information on the prescription medications you have filled at pharmacies, and other service providers collect additional types of health information.
A copy of your consent form will be sent securely to Services Australia 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 personal details (street address and Medicare number) 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 personal details you provided at initial entry to ‘Join Us’ are stored.