Patient Information
Patient information
How BioGrid supports research while protecting your privacy and ensuring your data is used responsibly.
How BioGrid supports research while protecting your privacy
Health data plays an important role in improving care, treatments, and outcomes for patients and communities.
BioGrid supports research that uses this data responsibly, helping researchers and institutions work together while ensuring information is handled securely, ethically, and with care.
Why health data is used in research
Research often depends on data collected through healthcare, such as hospital records, clinical registries, and general practice data.
When used appropriately, this information helps researchers to:
- better understand diseases and treatments
- improve healthcare services
- generate evidence that supports better patient outcomes
BioGrid helps make this research possible by enabling access to data in a way that is secure, governed, and carefully managed.
How your privacy is protected
Protecting your privacy is central to how BioGrid works.
BioGrid does not make data openly available or accessible to the public. Instead, it provides a controlled environment where:
- data is accessed only for approved research purposes
- strict ethical and governance approvals are required
- access is limited to authorised researchers
- data use is monitored and auditable
BioGrid Australia is structured so that patient identifying and clinical information are kept separate. This means researchers can never know the identity of the patients whose information is stored in the databases.
Researchers can conduct research while patient privacy is fully protected.
Your information is confidential and cannot be used by researchers who are not approved to use BioGrid Australia. Your information is protected and we are not allowed to identify you by law.
How BioGrid works
BioGrid operates a federated model, which means data is not stored in a single central database.
Instead, data remains with the organisations that hold it, such as hospitals or registries. BioGrid connects these organisations within a secure, governed framework, allowing approved researchers to work with data while maintaining appropriate control and oversight.
This approach helps enable research while protecting privacy and maintaining trust.
What this means for you
In most cases:
- you will not be contacted directly about research supported by BioGrid
- your data is used only where appropriate approvals are in place
- your information is handled within secure, controlled environments
BioGrid’s role is to ensure that when health data is used for research, it is done responsibly and with respect for patient privacy.
How your data is used
Health data helps researchers better understand diseases, improve treatments, and deliver better outcomes.
BioGrid supports this by enabling researchers to access and use data responsibly, often across multiple organisations and systems.
Frequently asked questions
BioGrid Australia is a research collaboration established over 20 years ago by Australia's health and medical community, involving hospitals and research institutions from around Australia.
BioGrid Australia helps improve research into various diseases by allowing researchers to share information while protecting patient privacy and maintaining security.
BioGrid has helped researchers and organisations move from complex challenges to real world outcomes - you can read about some of these projects on our Case Studies page.
There are two sorts of information.
- Identifying information
Your name, date of birth and part of your Medicare number is used to create a unique code for you. This is done securely on BioGrid's systems - no-one sees this information.The unique code will be attached to your clinical information. - Clinical information
Your clinical information is kept on a different system and identified only by your unique code. The type of information will include things like diagnosis and treatment details. This is the information that is shared with researchers.
There may not be direct benefits to you. However, your information will be used to produce clinical research studies and reports that may improve treatments in the future.
There is always a risk of maintaining privacy of personal information. BioGrid uses the most rigorous procedures and the latest technology to minimise the chances of this happening. You can read more about this on our Privacy and Data Security page.
BioGrid Australia is structured so that patient identifying and clinical information are kept separate. This means researchers can never know the identity of the patients whose information is stored in the databases. Researchers can conduct research while patient privacy is fully protected.
Your information is confidential and cannot be used by researchers who are not approved to use BioGrid Australia. Your information is protected and we are not allowed to identify you by law.
Instead of storing data in one location for analysis, BioGrid enables researchers to share their data without having to transfer it, allowing them to continue controling it. BioGrid securely connects approved datasets while maintaining institutional governance and oversight.
All data shared research via the BioGrid platform has no personal information attached. However we understand that not everyone is comfortable about having his or her clinical informationused for research. If you do not want your details to be part of the data sets that are linked by BioGrid Australia's platform, this will not affect your treatment. You will receive the same level of care.
To stop your information being made available through BioGrid Australia, you can do any of the following:
- complete and fax the patient opt-out form to: BioGrid Australia (Fax: 03 9342 8548) or mail to the address on the form
- complete and email the patient opt-out form to: enquiries@biogrid.org.au
- contact your hospital's Ethics & Research Office during office hours
- contact the BioGrid Australia office on 03 9342-2690 during office hours
You can withdraw at any time.
You should be aware that, unless you tell us that you refuse to have your information accessed, we will assume that you are happy to be part of the data sets that are shared via the BioGrid Australia platform and used for research.
About BioGrid
BioGrid is a national research data service enabling secure, ethical collaboration across Australia’s health and medical research community.
Governance
BioGrid is governed, represented, and held accountable as a member-led organisation supporting the Australian clinical and research communities.