BioGrid Australia and you

We want to inform you of a new aspect of research into serious chronic diseases. For many years, doctors and hospitals have collected information on the way people's health alters over the years, the pathology and other test results, and a patient's response to treatment. In the past, this patient information was usually recorded on paper files. More recently, much of this information has also been stored on computer databases. With the development of larger and more powerful computers, it is now possible to combine information in computer databases from a number of hospitals. By doing this researchers can look at disease patterns over time in larger numbers of patients and gain important information that would not be possible by using information from one hospital. The more patients involved, the more information is collected and the more powerful the research can be in answering questions such as:

• the types of people who develop specific illnesses and symptoms;
• tracking any effects on health over time; and
• studying the effectiveness of different treatments.

If you are a patient, and your hospital is in collaboration with BioGrid Australia, we would like your information to be available for research as part of the BioGrid Australia project.

What is BioGrid Australia?

BioGrid Australia is a research collaboration involving many Victorian hospitals and some interstate hospitals.

BioGrid Australia uses a web of computers to improve research into various diseases by allowing researchers to share disease information while protecting patient privacy and maintaining security.

To make this research most effective we need to include information on the majority of patients with particular diseases in our community.

To start with, the hospital databases that connect with BioGrid Australia will be those involving patients with cancer, epilepsy, cystic fibrosis, inflammatory bowel disease and diabetes.

What information will be on the BioGrid Australia database?

There are two sorts of information.

Identifying information

We will record your name, date of birth and part of your Medicare number on the BioGrid Australia computer and create a unique code for you. Only this unique code will be attached to your clinical information.

Clinical information

This information will be kept on a different computer database and identified only by your unique code. The type of information will include things like diagnosis and treatment details

Are there any benefits or risks?

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 ensures that this is minimal.

How will BioGrid Australia protect my privacy?

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 does BioGrid Australia work?

The process is as follows:

A hospital electronically sends the identifying data referred to above to BioGrid Australia to create the unique code. The unique code and limited identifying information remain in the BioGrid Australia central database, with access restricted to a senior BioGrid Australia system manager. No clinical information is stored in the central database.

The unique code is encrypted and then sent back to the hospital and stored with the clinical information.

The only people who are allowed to access BioGrid Australia clinical information are authorised researchers who must obtain permission from both the relevant doctor at your hospital and the BioGrid Australia management committee.

The approved researchers are only able to analyse the clinical information for which they have permission. They will not receive any identifying information.  All access to BioGrid Australia is monitored and security audited.

Click here to read more about how BioGrid works

What if I don't want my information to be part of BioGrid Australia?

All data used for BioGrid research has no personal information attached.  However we understand that not everyone is comfortable about having his or her clinical information in a database for research. If you do not want your details to be part of BioGrid Australia research information, this will not affect your treatment at the clinic.  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

Patient Opt Out

You can withdraw from the BioGrid Australia project at any time.

You should be aware that, unless you tell us that you refuse to have your information accessed by BioGrid Australia, we will assume that you are happy to be part of BioGrid Australia research.