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 information was usually recorded on paper patient 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 we can look at disease patterns over time in larger numbers of patients and learn things 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:
If you are a patient, and your hospital is involved in BioGrid Australia, we would like your information to be available for research as part of the BioGrid Australia project.
BioGrid Australia is a research collaboration involving many Victorian hospitals and some interstate hospitals (so far from Tasmania and South Australia).
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.
There are two sorts of 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..
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.
There may be not 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; however, we have paid a lot of attention tho this an have a number of strategies to ensure that this is minimal.
BioGrid Australia is structured so that patient identifying and clinical information are kept separate. This means researchers can never know the identity of the people involved in the research. 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.
The process is as follows:
We understand that not everyone is comfortable about having his or her clinical information in a database for research. If you do not want to be part of BioGrid Australia, this will not affect your treatment at the clinic. You will receive the same level of care.
You can withdraw from the BioGrid Australia project at any time.
You should be aware that, unless you tell us that you refuse to be part of BioGrid Australia, we will assume that you are happy to be part of BioGrid Australia.
Please post this form to:
BioGrid Australia
6 North
C/- Post Office
Royal Melbourne Hospital
Grattan St, Parkville Vic 3050
To Whom It May Concern
I do not wish for my identifying information or clinical information to be part of BioGrid Australia.
Please take the steps required to ensure that my data will not be accessible to BioGrid Australia.
Yours sincerely,
(Name)
(Hospital/Clinic)
(Email Address)
(Phone Number)