Personal information includes information or an opinion about an individual that is reasonably identifiable. For example, this may include your name, age, gender, postcode and contact details.
Under the AU Privacy Act, special provisions apply to personal information which is sensitive information. Sensitive information includes information or an opinion about an individual’s racial or ethnic origins, political opinions, religious beliefs, sexual orientation, or criminal record. Sensitive information also includes health information, genetic information or biometric information. There is no separate category of sensitive information under the NZ Privacy Act. Under the NZ Privacy Act, these types of information are treated as personal information.
What personal information do we collect?
We may collect the following types of personal information:
- mailing or street address;
- email address;
- telephone number and other contact details;
- age or date of birth;
- information about your lifestyle, general health, family history and medical information including in relation to your inflammatory bowel disease, that you provide to us directly through your use of our CCCare system or indirectly through your medical service providers from whom you permit us to collect information;
- any additional information relating to you that you provide to us:
- directly through your participation in specific Human Research Ethics approved research work where data is held by CCC; and
- directly through our CCCare system or indirectly through your use of our CCCare system or through other websites or accounts from which you permit us to collect information; and
- any other personal information, or sensitive information, that may be required in order to facilitate your dealings with us or in relation to your care.
We may collect these types of personal information either directly from you, or from third parties. We may collect this information when you:
- register with a medical service provider and consent to your medical service provider’s use of our CCCare system (including during routine or virtual occasions of care with your medical, nursing, dietetic or other IBD clinical or support staff at your IBD care location – as would be routinely documented for adherence to good clinical documentation standards);
- directly register on our CCCare system;
- communicate with us through correspondence, by telephone, email, or when you share information with us from other social applications, services or websites; or
- interact with our CCCare system, sites, services, content and advertising.
If you do not consent to the collection of your personal information set out above, we may not be able to make the CCCare system functionality available to you (but you will still receive your usual treatment course, as advised by your doctor). Please discuss this with your local IBD Care Service.
Why do we collect, use and disclose personal information?
We may collect, hold, use and disclose your personal information for the following purposes:
- to enable and facilitate your medical service provider’s use of the CCCare system and their provision of health care services to you using the CCCare system;
- to enable you to access and use our website, services and the CCCare system;
- to operate, protect, improve and optimise our services, the CCCare system and our users’ experience, and to perform analytics;
- to send you service, support and administrative messages, reminders, technical notices, updates, security alerts, and information requested by you;
- to comply with our legal obligations, resolve any disputes that we may have with any of our users, and enforce our agreements with third parties;
- to provide you with technical software support.
To whom do we disclose your personal information?
- specific third parties authorised by you to receive information held by us, including your medical service providers and the relevant institutions where you receive your care (hospitals and universities);
- other persons, including government agencies, regulatory bodies and law enforcement agencies, or as required, authorised or permitted by law;
- our employees and related bodies corporate;
- third party suppliers and service providers (including providers for the operation of our CCCare system, websites and/or our business or in connection with providing our services to you); and
- professional advisers, dealers and agents.
As above, if you do not consent to the disclosure of your personal information to these third parties, we may not be able to make the CCCare system functionality available to you.
We may use and disclose data which has undergone our rigorous de-identification process. We may disclose this de-identified data to researchers, laboratories or other carefully selected third parties, including research collaborators for ethically-approved medical research purposes.
We may also supply this de-identified data on a commercial basis to commercial organisations, such as pharmaceutical and other medical services companies, in order to assist them in their development and distribution of, and strategies for marketing and distributing, medical treatments and similar products. These particular activities do not involve your identified information. Any funds generated from the sharing of such de-identified data are used by CCC to support our mission of optimising IBD care and contributing to research for a cure.
When we do this, we deploy strict measures to ensure the data is rigorously de-identified.
Disclosure of personal information outside Australia or New Zealand
We may disclose:
- your personal information collected in Australia to the third parties described above which are located in New Zealand; and
- your personal information collected in New Zealand to the third parties described above which are located in Australia,
To the extent that your personal information is disclosed to third parties in Australia and New Zealand, and/or to recipients not in Australia or New Zealand, we will take reasonable steps to ensure that any overseas recipient will deal with such information in a way that is consistent with/provides comparable safeguards to those under, the respective Privacy Acts.
Using our website and cookies
We will collect personal information about you when you use and access the CCCare system.
We may also use ‘cookies’ or other similar tracking technologies on the CCCare system that help us track your CCCare system usage and remember your preferences. Cookies are small files that store information on your computer, TV, mobile phone or other device. They enable the entity that put the cookie on your device to recognise you across different websites, services, devices and/or browsing sessions. You can disable cookies through your internet browser but our websites may not work as intended for you if you do so.
We may hold your personal information in either electronic or hard copy form and we may store your personal information using a third party cloud provider. We take reasonable steps to protect your personal information from misuse, interference and loss, as well as unauthorised access, modification or disclosure and we use a number of physical, administrative, personnel and technical measures to protect your personal information. For example, we encrypt all data in the CCCare system and restrict who may access data stored in the system. However, we cannot guarantee the security of your personal information.
If we no longer need to hold your personal information, we will take reasonable steps to destroy or permanently de-identify that information.
Accessing or correcting your personal information
You can access the personal information we hold about you by contacting us using the information below. Sometimes, we may not be able to provide you with access to all of your personal information and, where this is the case, we will tell you why. We may also need to verify your identity when you request your personal information.
If you think that any personal information we hold about you is inaccurate, please speak with your local IBD treating team who will make the corrections directly. If your local IBD treating team is unable to assist, please contact us and we will take reasonable steps to ensure that it is corrected.
Making a complaint
If you think we have breached either one of the Privacy Acts, or you wish to make a complaint about the way we have handled your personal information, you can contact us using the details set out below. Please include your name, email address and/or telephone number and clearly describe your complaint. We will acknowledge your complaint and respond to you regarding your complaint within a reasonable period of time. If you think that we have failed to resolve the complaint satisfactorily, we will provide you with information about the further steps you can take, including how you may seek to resolve the complaint with the relevant regulatory authorities.
Head of Operations
Crohn’s Colitis Cure
Level 15, 1 O’Connell Street, Sydney, NSW, 2000
Last updated: [27 April 2022]