Publication date: Version 1.1, September 2021
About this policy
This privacy policy outlines the personal information handling practices of the Melanoma and Skin Cancer Advocacy Network Ltd (MSCAN, we, us, our).
We publish updates to this privacy policy on our website when our information handling practices change.
1. Who we are
1.1 MSCAN’s mission is to listen to, represent and inform the melanoma and skin cancer community with a focus on three key areas: innovation in research, advocacy & influencing policy and resources and information.
1.2 MSCAN is committed to protecting the privacy of individuals we interact with. We understand your health and experiences with melanoma or skin cancer are very personal and private.
1.3 We collect, hold, use and disclose personal information to carry out our functions or activities, which include:
(a) to listen to, represent and inform the melanoma and skin cancer community;
(b) communicating with the public, stakeholders and the media including through our website;
(c) to promote innovation in care and research;
(d) to advocate for changes in policy regarding melanoma and skin cancer care and research;
(e) to provide the public and stakeholders with resources and information; and
(f) assessing suitable candidates for opportunities within MSCAN.
2. Collection of your personal information
2.1 At all times we try to only collect the information we need for the particular function or activity we are carrying out.
2.2 The main way we collect information about you is when you give it to us. When you give us your personal information, we consider you to have consented to us collecting it. For example, we collect personal information such as contact details, name, gender, stage of disease and age when you:
(a) contact us to ask for information;
(b) subscribe to our newsletter;
(c) are a clinician or researcher who works with MSCAN;
(d) donate to MSCAN;
(e) enter a competition run by MSCAN; or
(f) apply for a position within MSCAN.
2.3 We may collect information from you when you request access to our resources. We will collect your stage of disease and age so we can understand who we are reaching.
2.4 We may also collect contact details and some other personal information if you are on our committees or participating in research or advocacy meetings with us.
2.5 We may use your address to provide hard copy resources and materials to you. We may use your phone number to contact you as part of fundraising campaigns. You can opt out at any time.
3. Collecting sensitive information
3.1 Sometimes we may need to collect sensitive information about you, for example, to provide tailored resources according to your type of cancer of stage of diagnosis. Sensitive information we may collect might include information about your health, your cancer diagnosis or stage or treatment, racial or ethnic origin, political opinions, association memberships, religious beliefs, sexual orientation, criminal history, genetic or biometric information.
3.2 MSCAN only collects sensitive or health information with your consent. When you voluntarily provide your information in order to access MSCAN resources, we assume this is implied consent for us to collect your information.
4. Indirect collection
4.1 In the course of conducting advocacy and research, we may collect personal information (including sensitive information) about you indirectly from publicly available sources or from third parties such as:
(a) your authorised representative, if you have one; or
(b) publicly available sources.
5. Anonymity
5.1 Where possible, we will allow you to interact with us anonymously or using a pseudonym. For example, if you contact us via our website, we will not ask you for your name unless we need it to adequately handle your question.
5.2 However, for most of our functions and activities we usually need contact information and enough information about your melanoma or skin cancer experience to enable us to provide you relevant information and resources.
6. Collecting through our website
6.1 We collect information though our website in the following ways:
web analytics
6.2 We collect data about how you interact with our website. The main purpose of collecting your data in this way is to improve your experience when using our site. We also use website data to understand and report on which pages and downloads are accessed by visitors.
(a) The types of data we collect include:
(b) your device’s IP address (collected and stored in an anonymized format);
(c) pages visited on our website;
(d) date and time when pages were accessed;
(e) downloads or listens to podcasts;
(f) time spent on a page;
(g) device type, operating system and browser information;
(h) device screen size; and
(i) geographic location (city).
Cookies
6.4 Cookies are small data files transferred onto computers or devices by websites for record-keeping purposes and to enhance functionality of websites. Most browsers let you to choose whether to accept cookies or not. If you do not wish to have cookies placed on your computer, you can set your browser preferences to reject all cookies before accessing our website.
Email lists, registrations and feedback
6.5 We collect information that you provide to us when subscribing to our newsletter or when submitting a comment, question or message via our website.
6.6 We use MailChimp to manage our mailing list. MailChimp’s privacy policy is accessible here: https://mailchimp.com/legal/privacy/
7. Social networking services
7.1 We use social networking services such as LinkedIn, Instagram and Facebook to communicate with the public about our work. When you communicate with us using these services we may collect your personal information, but we only use it to help us to communicate with you and the public. The social networking service will also handle your personal information for its own purposes. These services have their own privacy policies.
8. Disclosure
8.1 MSCAN does not disclose personal information. All functions and activities are undertaken by MSCAN, meaning we use your personal information internally and do not disclose it.
8.2 We may use statistics taken from our database to attract funding or sponsors. These statistics are de-identified information, such as the proportion of subscribers from regional or metro areas.
8.3 MSCAN does not disclose personal information overseas.
9. Quality of personal information
9.1 To ensure the personal information we collect is accurate, up-to-date and complete, we:
(a) record information in a consistent format, for example, in our mailing list;
(b) where necessary, confirm the accuracy of information we collect from a third party or a public source;
(c) promptly add updated or new personal information to existing records when requested; and
(d) regularly check the accuracy of our contact lists.
9.2 We also review the quality of personal information before we use it.
10. Storage and security of personal information
10.1 We may store personal information in locations outside the direct control of MSCAN (for instance, on servers or databases co-located with hosting providers).
10.2 We take steps to protect the security of the personal information we hold from both internal and external threats by:
(a) assessing the risk of misuse, interference, loss, and unauthorised access, modification or disclosure of information;
(b) limiting the personal information we collect and hold by only collecting the minimum information necessary; for example, to receive the MSCAN newsletter, only a first name and email address are required; and
(c) taking measures to address those risks, for example, we regularly check that staff only access those records when they need to.
10.3 We destroy or de-identify personal information in a secure manner when we no longer need it.
11. Accessing and correcting your personal information
11.1 You have the right to ask for access to personal information that we hold about you, and ask that we correct that personal information. You can ask for access or correction by contacting us. We will respond within 30 days.
11.2 If we refuse to give you access to, or correct, your personal information, we will provide you with reasons in writing.
12. How to make a complaint
12.1 If you wish to make a complaint about how we have handled your personal information, please do so in writing. We will respond to your complaint within 30 days.
12.2 If you are not satisfied with our response, you can subsequently make a complaint to the Office of the Australian Information Commissioner, or the below state based health regulators:
(a) Victoria: Health Complaints Commissioner
(b) New South Wales: Privacy Commissioner
12.3 Other states and territories do not have applicable privacy legislation.
13. Contact us
You can contact us by:
(a) Emailing us directly; or
(b) Writing to us at MSCAN, 1/80 Drummond Street, Carlton, VIC 3053.