Crohn's Colitis Cure

By providing personal information to us, you consent to our
collection, use and disclosure of your personal information in accordance with
this Privacy Policy and any other arrangements that apply between us. We may
change our Privacy Policy from time to time by publishing changes to it on our
website (www.c-c-cure.org). We encourage you to check our website periodically
to ensure that you are aware of our current Privacy Policy.

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:

• name;
• 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
  de-identify your personal information, which may then be used and
  disclosed for research purposes and/or on a commercial basis as described in
  this Privacy Policy;
• 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?

We may disclose personal information in identified form, on
a confidential basis, for the purposes described in this Privacy Policy to:

• 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.

De-identified data

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,

for the purposes described in this Privacy Policy.
Otherwise, we will not generally disclose your personal information to
recipients outside of Australia or New Zealand.

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 also use cookies to enable us to collect data that
may include personal information. For example, where a cookie is linked to your
account, it will be considered personal information under the Privacy Acts. We
will handle any personal information collected by cookies in the same way that
we handle all other personal information as described in this Privacy Policy.

Security

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.

Links

Our website may contain links to websites operated by third
parties. Those links are provided for convenience and may not remain current or
be maintained. Unless expressly stated otherwise, we are not responsible for
the privacy practices of, or any content on, those linked websites, and have no
control over or rights in those linked websites. The privacy policies that
apply to those other websites may differ substantially from our Privacy Policy,
so we encourage individuals to read them before using those websites.

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.

Contact Us

For further information about our Privacy Policy or
practices, or to access or correct your personal information, or make a
complaint, please contact us using the details set out below:

Head of Operations
Crohn’s Colitis Cure 
Level 3, 100 Harris St, Pyrmont NSW 2009 AUSTRALIA

[email protected]

Last updated: [27 April 2022]