ANZUP Cancer Trials Group Limited (ANZUP) aims to protect the privacy of the personal information we collect and hold whilst carrying out our activities.
ANZUP is bound by the National Privacy Principles in the Privacy Act 1988 (Cth) (Act). ANZUP is also bound by some privacy legislation in state jurisdictions.
This statement explains:
- what types of personal information we might collect
- how we aim to use personal information
- when we will disclose personal information to others
- how we manage and secure personal information, and
- how you can access personal information that we hold about you.
This statement does not form part of any contract.
From time to time, we may review and update this statement – for example, to reflect changes to the law, technology or our company.
What types of personal information do we collect?
ANZUP aims only to collect ‘personal information’ (as defined under the Act) that is necessary for its activities. The types of personal information that we collect will depend on the nature of the interaction between you and ANZUP, and where and how we collect the information.
Most commonly, the personal information we collect includes names, addresses, email addresses, telephone and fax numbers and other contact details. We also collect personal information in connection with our participation in and involvement with clinical trials.
As a result of our involvement in clinical trials, we frequently collect ‘health information’. The specific definition of ‘health information’ varies depending on which jurisdiction the information was collected in, but in simple terms health information is information or an opinion about a person’s health. Depending on the jurisdiction in which the health information is collected, ANZUP may be bound to deal with that health information in accordance with ‘health privacy principles’. ANZUP endeavours to comply with best practice in relation to the collection, disclosure and use of health information, so whether the health information we collect from you was collected in a jurisdiction where health privacy principles apply or not, to the extent that it does not conflict with any other legal obligations ANZUP may have, ANZUP will treat your health information as if the health privacy principles did apply.
Sometimes we may collect ‘sensitive information’ (as defined under the Act), which includes information about your racial or ethnic origin, religious beliefs or affiliation, or health. The Act requires us only to collect sensitive information from you where this is consented to by you, or if the collection is required by law, and only to share sensitive information if ANZUP has a belief that its use and/or disclosure is necessary to prevent threats to health, life or safety of any individual.
How do we collect your personal information?
We usually collect personal information directly from you, for example when you send us correspondence by e-mail or in writing, or deal with us over the telephone or in person, or make a donation.
Sometimes, someone else may provide us with personal information about you, with or without your direct involvement. For example, we might collect your personal information from:
- another organisation or alliance you are a member of
- an investigator who is working on one of the clinical trials we are involved in
- another clinical trials group
- a pharmaceutical company
- your representative (such as your legal advisor)
- publicly available sources of information (such as telephone directories), or
- commercially available mailing and marketing lists.
How do we use your personal information?
If we ask you to provide information about yourself, in most cases we will let you know the purpose for which we require the information. For example, we may use your personal information to:
- communicate with you
- provide information to you about clinical trials
- facilitate your participation in a clinical trial (including as an investigator or a trial subject)
- seek your feedback, and
- comply with our legal obligations.
When we collect personal information and have personal information disclosed to us in the course of conducting and otherwise being involved in clinical trials, that information is often used to compile the results of the clinical trial and to assist further investigations. To the extent that the information is useful without referring to the individual concerned, we de-identify that information as early as we can in the process so that the individual concerned cannot be identified from the information alone.
When will we disclose your personal information to others?
ANZUP aims to confine its disclosure of personal information to the primary purpose for which it has been collected, or for a related purpose. This means ANZUP will usually only disclose personal information in connection with its administrative functions, or its clinical trials work.
Sometimes we may also disclose your personal information outside ANZUP for the purpose for which the information was collected, or for a related purpose – for example when disclosure is necessary to comply with our obligations under the Corporations Act 2001 (Cth), or for security reasons.
We may provide your personal information to:
- outsourced service providers who perform functions on our behalf, such as organisations providing security services, providing email and mail handling services
- authorised agents and representatives of ANZUP who sell products or provide services on our behalf
- sponsors of events or initiatives
- anyone authorised by you to receive your personal information (your consent may be express or implied and can be withdrawn at any time)
- anyone we are required by law to disclose it to.
We generally require third parties only to use your personal information for the specific purpose for which it was given to us and to protect the privacy of your personal information. We will only disclose your personal information to a third parties on the basis that such parties agree with ANZUP to keep your information confidential.
If you have given us your consent, we may disclose your personal information to pharmaceutical companies, other clinical trials groups and other third parties for the purposes of them contacting you in relation to clinical trials. You can withdraw your consent at any time by informing us that you withdraw that consent.
To the extent that our website contains links to sites operated by third parties, including other organisations, those linked websites are not controlled by us and we are not responsible for the privacy practices of the site operators. Before you disclose your personal information to any linked websites, we advise you to examine their privacy polices and terms and conditions of use.
How we manage and secure personal information
We have security systems in place to protect your personal information and have directed our staff that personal information must be dealt with in accordance with this statement.
Updating personal information that we hold about you
We aim to keep all personal information we hold both accurate and up-to-date and encourage you to tell us if you change your contact details.
If you believe that the information we hold about you is incorrect, incomplete or out-of-date, please email us at firstname.lastname@example.org and we will make any changes necessary to ensure that your details are correct.
If we no longer require your personal information, we will generally destroy or de-identify that information. We are required by law to keep some types of health information for certain periods of time. ANZUP reserves the right to retain information for a period longer than that for which it is required to retain the information if ANZUP believes it is necessary.
How you can access personal information that we hold about you
You may seek access to personal information that we hold about you by emailing us at email@example.com.
If you make a request for access to your personal information, we will ask you to verify your identity and specify what information you require. We may also charge a reasonable fee to cover our costs of supplying you with access to this information.
In some circumstances, the Act entitles ANZUP to deny access, for example if providing access would impact unreasonably on the privacy of others or prejudice negotiations in which we are involved. If we do refuse access, we are required to let you know the reasons for our refusal.