How does the register make sure that my data is secure?
The security and privacy of information provided by participants and the health data accessed by the ‘Join Us’ register is taken very seriously.
Several strategies are used to make sure that your data is secure:
- The ‘Join Us’ register is managed by The George Institute Australia and the University of New South Wales, both world-leading research facilities with comprehensive procedures in place to manage sensitive health data.
- The ‘Join Us’ register will store your health 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 that you provide (e.g. name and email address) are stored separately from health data at all times. When the health data is accessed to find eligible participants, it is in a de-identified form. It is only when the eligibility lists have been created and health information removed, that these personal details will be used by the register to make contact with you.
How does the register work?
The ‘Join Us’ register uses health information that is routinely collected by governments and health care providers to identify register participants who might be eligible for research studies. The health information will also be used in a de-identified form for approved research studies to better understand patterns of disease and the impact of treatments, procedures and other factors influencing the health of the Australian population.
Your personal details (first name, last name, email address, address and post code, date of birth, sex, and optional Medicare number) will be regularly matched to records relating to your current and past health treatments, procedures, and use of health services. Your records will be extracted from central sources in a de-identified form and stored in a secure data repository where the matching process with research studies takes place. Using separate locations and staff approval requirements, and different identifying codes to store your personal information and your health information means that the risk of your health information being linked to your personal information is low.
How is my data used to match me to research studies?
Researchers wanting help with recruiting participants for their research study will discuss their study with the ‘Join Us’ team and their particular inclusion and exclusion criteria (these describe the types of participants they are looking for – for example people aged between 40 and 60 who have high blood pressure). The ‘Join Us’ team will check that the study has its own human research ethics approval and see if ‘Join Us’ has enough participants that would be eligible for that study.
A list of potentially eligible participants will then be generated and the ‘Join Us’ team will send them an invitation with information about the study. If you receive an invitation, you can then consider whether you are interested in taking part. Importantly, the invitation is sent by the ‘Join Us’ team and your contact details or health information is not shared with the researchers. The researchers will only know that you have been invited if you get back to them directly.
How will my de-identified health data be used to answer health research questions?
Researchers wanting to answer health research questions using de-identified health data will discuss their study with the ‘Join Us’ team. Once again, before accessing data for this purpose, 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 perform the data analysis. Importantly, researchers are only provided with access to de-identified data that cannot be linked to personal information such as your name or email address.
Your health data will be stored in 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 personal details collected during the registration phase will be held within an industry standard, password protected, encrypted database designed to meet the privacy and security requirements of commercial, government and not for profit sectors. Your data are physically located, and will remain, within Australian borders. Any information provided by you in the optional survey at registration will be redirected for storage into the ERICA platform.
Your personal details (e.g. name, date of birth, sex, Medicare number if provided, and email address) will be stored separately to your health data. The system will assign a unique identifying number to your personal details. That unique number (not your personal details) will be used to tag all records of your health data. Importantly, the database that contains your personal details linked to your unique identifying number is separate from where your tagged health data is stored. The database linking your personal details to your unique identifying number is only accessible to ‘Join Us’ team members with special security clearance. This arrangement ensures that no one knows which health data belong to which person.
You will not be identifiable in published study reports and no results for individual participants will be disclosed. Additionally, your data will not be used for an unspecified purpose outside of ethically approved studies.
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 stop having your data added to the ‘Join Us’ register or 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 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 provide is personal information regulated by the Privacy Act 1988 (Federal) and the Privacy and Personal Information Protection Act 1998 (NSW). 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 any breach of the Information Protection Principles as contained in the Privacy and Personal Information Protection Act. Further information on how the University of New South Wales protects personal information such as that held by ‘Join Us’ is available in the UNSW Privacy Management Plan.
Is the data held offshore?
All data will be stored on Australian shores and data hosting services are physically located in secure data centres in Sydney.
Why do you need my Medicare number?
Providing your Medicare number is optional. It is one of the ways health data can be accessed from sources such as the Medicare Benefits Scheme and the Pharmaceutical Benefits Scheme. This health data is then:
- used to match participants to research studies, and
- stored in a de-identified form [without any personal details] with that of other participants to help approved researchers answer health and medical research questions.
Why can I not just enter my health information myself?
Our model ensures that we make it easy for people to register and that we do all the hard work of getting the health data.
We will be refreshing the health data quarterly so that it’s up to date. Otherwise, we would have to request periodic updates from participants, which we want to avoid.
You do have the opportunity to complete an optional survey after registration to provide more health and demographic information. This will be held securely and added to the linked health information accessed from other sources and will assist with the matching process.