1. What is the ‘Join Us’ research register about?
‘Join Us’ is a national electronic research register for people aged 18 years or over who are interested in taking part in health research. The register will:
- Collect and hold your personal details;
- Collect and hold the health and demographic information you provide us;
- Use this information to match you to relevant research studies; and
- Allow us to contact you about research projects that you might be interested in joining.
Who manages the register?
‘Join Us’ is managed by The George Institute for Global Health (The George Institute), a not-for-profit medical research institute based in Sydney in collaboration with the University of New South Wales. The Chief Investigator is Professor Bruce Neal and the Co-Investigators are Dr Clare Arnott, Professor Louisa Jorm, Ms Angela Hehir, Dr Duong Tran and Dr Xingzhong Jin. The register is funded jointly by The George Institute and the University of New South Wales.
2. Do I have to participate in the ‘Join Us’ register?
Your participation in the ‘Join Us’ register is completely voluntary and there will be no cost to you. If you do not want to take part in the ‘Join Us’ register you do not have to. 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.
3. What do I need to do to participate?
You are eligible to join ‘Join Us’ if you are an adult aged 18 years or over and are currently living in Australia. If you decide to take part in the ‘Join Us’ register, you will be asked to:
- Read this Participant Information Statement.
- Provide personal details including your first name, last name, sex, date of birth, email address, and post code.
- Give us some information about your health and demographics that will help us match you to appropriate research studies.
- Agree to receive up to four invitations to research projects a year. Each initial invitation may be followed by one reminder if you don’t get back to us. This will be a maximum of 8 messages a year.
- Complete and submit the Consent Form.
You will also receive a regular electronic newsletter with updates about the ‘Join Us’ register but you can unsubscribe from receiving newsletters if you wish to.
4. Can I withdraw from the ‘Join Us’ register?
You are under no obligation to continue with the ‘Join Us’ register if you join. You may change your mind at any time. People withdraw from studies for various reasons and you do not need to provide an explanation.
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. Your decision to withdraw from the register will not affect your relationship with The George Institute or the University of New South Wales and will not affect your healthcare or disadvantage you in any way.
5. How is my information used to match me to a research study?
Researchers wanting help with recruiting participants to their research study 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.
6. What will happen to my data?
How are my data stored and de-identified?
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.
How long will my data be stored and how will it be destroyed?
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 Standard Handling Research Material & Data Procedure.
Can I access my data?
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.
7. Are there any risks involved?
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.
8. What are the possible benefits of taking part?
There is no guaranteed personal benefit for participating in this study, but your participation would be likely to make a contribution to the health of the larger Australian community. Other possible benefits may include the opportunity to take part in clinical trials investigating new treatments, and the opportunity to let your friends and relatives know about opportunities to take part in medical research. You will not receive reimbursement for taking part in ‘Join Us’ but there is a potential for individual studies to offer reimbursement for costs such as travel.
9. What are the alternatives to taking part in the register?
‘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.
10. How and when will I find out about the results of research I participate in through ’Join Us’?
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.
11. What if I want to withdraw from ‘Join Us’?
You may withdraw at any time. You can do so by:
12. What if I have a complaint or any concerns about ‘Join Us’?
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.
13. Will I receive compensation if I suffer any injuries or have complications?
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.
14. What should I do if I have further questions about my involvement in the register?
You can contact the ‘Join Us’ team by phone or email:
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.
Important Information: This form is only to be used by people aged 18 years or over.
Complete this form to provide your consent to participate in the ‘Join Us’ register.
Declaration by the participant
- I understand that I am being asked to provide consent to participate in the ‘Join Us’ register.
- I have read the Participant Information Statement and understood it, or someone has read it to me in a language that I understand.
- I understand that the result of research studies may be published in articles or journals.
- I understand that my participation in the ‘Join Us’ register is completely voluntary.
- I understand that I can withdraw my participation in the ‘Join Us’ register at any time and I do not have to provide a reason for my withdrawal.
- I understand that my information could be held indefinitely unless I withdraw from the ‘Join Us’ register and ask for it to be removed.
- I understand that I won’t be paid for joining ‘Join Us’.
- I have been given the opportunity to ask questions and any questions I have asked have been answered to my satisfaction.
- I declare that the information on this form is true and correct.
Version dated: 8 February 2021