Perth Blood Institute Privacy Policy

The Perth Blood Institute Limited respects your privacy and the importance of any personal or sensitive information you entrust to us. This privacy policy explains how and why we collect, use, hold and disclose your personal and sensitive information in accordance with the Privacy Act 1988 (Cth) (Privacy Act) and the Australian Privacy Principles (APPs).

  1. Introduction

Who are we? The Perth Blood Institute Limited (ABN 24164941815; we, us, PBI) is a non-profit organisation committed to preventing, treating and curing blood disorders. We run numerous clinical trials and perform research into bleeding and clotting disorders and blood cancers. For more information about us and what we do, please see www.pbi.org.au.

What is this Privacy Policy about? This Privacy Policy (Policy) applies to all personal information and sensitive information that we collect through our website at www.pbi.org.au (Website) and any research and clinical trials that we participate in or conduct ourselves. Clinical trials are research investigations in which people voluntarily participate in studies for new treatments and interventions to prevent, diagnose or manage blood disorders. Those are conducted according to strict protocols, including in relation to the use and collection of personal information.

Personal information is any information or opinion that identifies you and can include your name, contact details (e.g. email address, phone number and postal address) or anything else that could enable someone to easily identify you from that information or opinion - even if your name doesn't appear. It doesn’t include information where you cannot be identified.

Sensitive information is a sub-set of personal information that includes health information about an individual, genetic information that is not otherwise health information, biometric information used for the purpose of automated biometric verification or biometric identification and biometric templates.

We manage the personal information we collect in accordance with this Policy, the Privacy Act 1988 (Cth) and all other applicable laws.

Where can I find out about any changes to this Policy? We may need to update this Policy from time to time to reflect changes in the law or our data practices. We will let you know about any changes to this Policy via notification on our website.

            

  1. What personal information do we collect?

We may collect information about you when you visit or contact us by telephone, email, letter or through our website as set out below.

Research and clinical trials. We may collect the following personal and sensitive information from research and clinical trial participants.

  • Name
  • Contact details (including email, physical and/or mailing address and telephone number)
  • Emergency contact information (e.g. name and telephone of family members)
  • Date of birth
  • Current and historical medical information
  • Risk behaviours relevant to the collection of blood for research or clinical trials
  • Information about your interactions with us, including your survey responses to
  • Payment information (including to reimburse pre-agreed expenses associated with a trial).

We will give you a separate consent form and privacy disclosure notice that explains how your personal information will be used, protected, stored and disclosed if you participate in a clinical trial, provide blood samples for PBI Biobank (where we securely store blood and other human samples for up to 15 years) or participate in any other research programmes that we run.

If you do not provide us with your personal information, you will not be able to participate in clinical trial and/or research studies.

Website visitors. We may collect the following personal information when you visit or use our Website.

  • Donations, appeals and event bookings: First and last names, phone number(s), residential address, email address, payment details (including credit or debit card information), dietary requirements.
  • Newsletter subscription: First and last names, email address.
  • Expression of Interest (EOI) registration: First and last names, phone number(s), email address, residential address, school details (school, year, subjects).
  • Volunteering registration: Relevant work experience and skills.
  • Cookies: Information about how you access, use and interact with our Website.
  • “Contact us”: Information that you decide to provide through the “contact us” function.

We always endeavour to collect this information directly from you rather than anyone else unless it is unreasonable or impractical to do so.

If you do not provide us with this personal information,  you may miss out on newsletter subscriptions, tax receipts, volunteering and donation opportunities and information on events.

             

  1. Why do we collect, hold and use your personal information?

Research and clinical trial participants. We may collect, hold and use your use personal information and your sensitive information to conduct medical research into the cause, prevention and diagnosis of blood disorders. We may use that information for screening or selection purposes as well as to determine the efficacy or safety of treatments.

We may ask for your payment information in order to reimburse pre-agreed expenses associated with a trial.

Website visitors. We use personal information collected through our Website to:

  • provide information about clinical trials
  • contact you to respond to your requests, communicate with you about our services and manage our relationship with you
  • enable you to support fundraising campaigns and to keep you informed of our work
  • process donations and send receipts
  • identify and tell you about other services we think may be of interest to you
  • issue receipts and refunds (e.g. for cancelled events)
  • evaluate the quality of our products and services
  • conduct internal administrative and analytics
  • comply with our legal obligations, policies and procedures.

With your permission, we may also publish testimonials on our Website or for use in marketing campaigns.

Cookies. We also use cookies on our Website.  A cookie is a small text file that the Website may place on your device to store information. We may use persistent cookies (which remain on your computer even after you close your browser) to store information that may speed up your use of our Website for any of your future visits to the Website. We may also use session cookies (which no longer remain after you end your browsing session) to help manage the display and presentation of information on the Website. You may refuse to use cookies by selecting the appropriate settings on your browser. However, please note that if you do this, you may not be able to use the full functionality of the Website.

We may collect information about how you access, use and interact with our Website using tools such as Google Analytics. That information may include:

  • the location from which you have come to the site and the pages you have visited; and
  • technical data, which may include IP address, the types of devices you are using to access the Website, device attributes, browser type, language and operating system.

                  

  1. Who do we share your personal information with and why?

We may disclose personal information to external service providers so that they may perform services for us or on our behalf.

We may also share your personal information with the following people and entities so we can provide our services and carry out our activities.

  • our employees whose role requires access to your personal information
  • consultants and/or external service providers we engage
  • organisations involved in managing our funding functions
  • our Website provider
  • our insurers
  • research and clinical trial partners, other health organisations and/or academic institutions (noting that personal information is only shared with the prior consent of the relevant individuals).

We may also disclose your personal information to others where:

  • we are required or authorised by law to do so;
  • you have expressly consented to the disclosure or the consent may be reasonably inferred from the circumstances; or
  • we are otherwise permitted to disclose the information under the Privacy Act.

                  

  1. Do we send your information overseas?

We do not disclose your personal information to recipients located outside of Australia except as may be required for a specific research project. Details of our research projects and clinical trials can be found on our website. Please contact us directly if you would like further details of any specific research project.

Details of any personal information to be sent to overseas recipients will be set out in a separate consent and privacy disclosure notice for the relevant research project.

                         

  1. How do we store your information?
  • does not have permission to access your information
  • has protocols in place to ensure your data is safe and secure.
  • does not store any credit card or banking details, which are held by our payment processor (Stripe).

Some information about you may also be recorded in paper files that we store securely.

We implement and maintain processes and security measures to protect personal information that we hold from misuse, interference or loss, and from unauthorised access, modification or disclosure.

We will also take reasonable steps to destroy or de-identify personal information once we no longer require it for the purposes for which it was collected or for any secondary purpose permitted under the APPs, subject to:

  • any legal requirement to hold this information longer
  • Murdoch University HREC policies (for biobank samples)
  • the Australian Code of Responsible Conduct of Research (for research data).

                      

  1. Marketing

We may use your personal information to offer you information about our services we believe may interest you, but we will not do so if you tell us not to.

Where you receive electronic marketing communications from us, you may opt out of receiving further marketing communications by following the opt-out instructions provided in the communication.

                                

  1. Your privacy rights

Access and correction. We do our best to make sure the personal information we hold about you is correct. You are entitled to ask us for access to your information and to request us to correct it if necessary. Please contact us at:

  • Email: [email protected]
  • Phone: + 61 8 9200 530
  • Post: The Perth Blood Institute, 18 Prowse Street, WEST PERTH, WA 6005

Please tell us as soon as possible if any of your contact details change, including your name, address, phone number(s) and email address.

Please note that we may need to verify your identify before fulfilling your request to access your personal information and there are circumstances in which we are not required to give you access to your personal information.

Complaints. Please contact us if you have any complaints about how we deal with your personal information and we will do our best to fix the problem straight away.

If you’re not happy with our response, you can contact the Office of the Australian Information Commissioner. You have the right to do this under the Privacy Act. 

 

                  

This Policy was last updated on 8 July 2020