Only Australian residents, who have been prescribed a Biogen product for spinal muscular atrophy (SMA), are eligible to enrol in the Zephyr patient support program (“Zephyr Program”). Such individuals who are below the age of 18 at their date of enrolment will need to provide parental consent to be eligible for enrolment.
- The Zephyr Program is a supervised patient support program sponsored by Biogen Australia Pty Ltd (“Biogen”) and managed and administered by Partizan Worldwide Pty Ltd (ABN 18 115 985 825) (“Partizan”). Partizan will provide and deliver all phone calls, emails and SMS for this program.
- Involvement in the Zephyr Program is designed to complement and support the prescribing instructions of the healthcare practitioner who is responsible for prescribing the relevant Biogen product for your condition (your “prescribing specialist”).
- The maximum duration of the Zephyr Program is two years from your confirmed enrolment into the program.
- The Zephyr Program consists of a number of different components. The exact services you are eligible to receive will be based on your individual needs and your treating healthcare professional’s preferences:
(i) In-home treatment and disease education delivered by trained nurses for patients.
This entails a prearranged visit by a Zephyr nurse who will have a discussion with you about your individual circumstances and health needs, provide education to you on your prescribed Biogen treatment and disease education on SMA. The training with a Zephyr nurse will include a discussion about your individual circumstances and health needs, provide education on your prescribed Biogen treatment, and wellbeing support depending on your specific needs.
(ii) Telephone based disease and treatment education, and health and wellbeing support delivered by trained nurses and support consultants.
This entails telephone based disease and treatment education, and health and wellbeing support delivered by trained nurses and support consultants. The Zephyr team will also seek to understand your wellbeing needs and provide or direct you to further information and services that may assist with their broader wellbeing needs. Further, any information regarding such third-party service providers (such as Occupational Therapists, Dietitians, or Physiotherapists) is for information purposes only regarding the fact that such service providers exist. It does not constitute and should not be taken as a medical referral, endorsement or representation as to the quality of any services or appropriateness of such services for you.
(iv) The provision of support materials specific to SMA, your prescribed Biogen medication, and your individual wellbeing and health needs.
Depending upon your communication preferences you may be provided with printed or emailed materials to support your Zephyr Program discussions.
(v) Access to the Zephyr Website.
The Zephyr Program gives you access to the Zephyr Website that displays information specific to SMA, your prescribed Biogen medication, and your individual wellbeing and health needs. The Zephyr website also includes access to functionality to set treatment and other reminders, request materials relevant to their prescribed treatment, and request a Zephyr support call.
(vii) Correspondence with your healthcare providers regarding the management of your prescribed treatment and progress whilst enrolled in the Zephyr Program.
As part of the Zephyr Program you have the option of providing the details of your treating healthcare professionals so that they may be kept informed about your progress on treatment whilst enrolled in the Zephyr Program. These updates include;
a. Written or verbal correspondence reporting on how you’re managing on your treatment and any potential health or wellbeing needs that have been identified through your interactions with the Zephyr team
b. Feedback on services and information provided to you through the Zephyr Program
- Enrolment into the Zephyr Program (for patients) can occur via calling the Zephyr Program and completing enrolment over the phone, a linked HCP sending an enrolment lead and the Zephyr team completing enrolment with you over the phone, or by going to the Zephyr patient website www.zephyrprogram.com.au and completing the online enrolment form. Upon receipt of your enrolment request, the Zephyr team will verify your eligibility before your enrolment can be accepted.
- You may opt out of the Zephyr Program, or components of the program such as phone calls, at any time by calling 1800 ZEPHYR (1800 937 497) or writing to the Zephyr Program at Partizan, Reply Paid 86597, North Sydney NSW 2059 Australia (no stamp required).
- Biogen reserves the right to amend and/or cease funding the Zephyr Program and/or terminate the Zephyr Program without notice at any time.
Partizan will collect, use, store and/or disclose personal information and sensitive personal information relating to you in connection with the Zephyr Program, for purposes of administering your involvement in the Zephyr Program. Partizan uses your personal information to manage your participation in the Zephyr Program. Partizan will not use your personal information for any other purposes unless Partizan has your consent to do so or is required to do so by law. If you do not provide personal information when requested, Partizan will not be able to manage your participation in the Zephyr Program and, as a result, you may not be able to participate. Partizan takes reasonable steps to protect such personal information from misuse, interference, loss and unauthorised access, modification or disclosure in accordance with the privacy laws of Australia.
Before you submit any information and agree to enrol in the Zephyr Program, you should be aware of, and consent, to the following:
Biogen Australia Pty Ltd (“Biogen”) has appointed Partizan Worldwide Pty Ltd (“Partizan”) to act on its behalf and assist in the administration of various features of its Zephyr patient support program (“Zephyr Program”). In order to participate in the Zephyr Program, you need to enrol. The Terms and Conditions of participating in the Zephyr Program are located at: www.zephyrprogram.com.au/terms-and-conditions.
During and after your enrolment in the Zephyr Program, Partizan (acting on behalf of Biogen) will collect personal information and/ or sensitive information relating to you. The collection of personal information is required so as to enable Partizan and Biogen to carry out the various administrative tasks to enable you to receive the various support services that are available through the Zephyr Program.
What is personal information?
“Personal information” includes information about you that identifies you or could reasonably be used to identify you. Partizan will collect personal information about patients enrolled in the Zephyr Program and healthcare professionals who are nominated by those patients.
The personal information collected and stored by Partizan may include your name, date of birth, current and previous addresses, telephone or mobile phone number, email address, occupation, sensitive information (see below) and any other personal information which you or others submit to us about you for the purposes of Partizan administering and managing the Zephyr Program.
Partizan also holds details of the Zephyr Program services that you take up or agree to participate in (including their status). If you request a specific service in relation to the Zephyr Program, Partizan may also collect information from you related to that service, including sensitive information.
What is sensitive information?
Partizan may collect sensitive information about your prescribed Biogen treatment, health status, medical history, related medical conditions and treatment.
How Partizan collects personal information
In the administration and management of the Zephyr Program, Partizan collects personal information including that of patients and their nominated healthcare professionals, in accordance with the Zephyr Program terms and conditions (available at: www.zephyrprogram.com.au/terms-and-conditions) Partizan collects personal information in a number of ways, including:
- directly from you, for example, when you provide information in person, by phone, in application or enrolment form or otherwise online; and
- from third parties involved in the Zephyr Program.
If you are a patient participant in the Zephyr Program, with your consent Partizan may collect your personal information from your prescribing specialist or their nominated clinic staff, your pharmacist or your nurse support provider (if applicable). Irrespective of the source of the information, both Biogen and Partizan respect and protect the privacy of your personal information.
How Partizan uses your personal information
Partizan will use your personal information, including your email address or telephone number, in accordance with Australian privacy laws. Partizan uses your personal information to manage your participation in the Zephyr Program. For example, in connection with the Zephyr Program, your personal information may be used to:
- enrol or register you for the Zephyr Program (including, if you are a patient, to contact you via telephone to confirm that you consent to participate in the Zephyr Program);
- provide you with services in connection with the Zephyr Program, administer and manage the Zephyr Program in accordance with the Zephyr Program terms and conditions (available at: www.zephyrprogram.com.au/terms-and-conditions);
- contact you as necessary regarding matters relating to the Zephyr Program;
- allow Partizan or other parties involved with the Zephyr Program to gain an understanding of your relevant health information, including medical history, medical conditions and requirements;
- report back your de-identified information as pooled data to Biogen for reporting, publication, presentation, research or market research purposes; and
- comply with laws on the reporting of adverse events.
Partizan will not use your personal information for any other purposes unless Partizan and Biogen have your consent to do so or is required to do so by law. If you do not provide personal information when requested, Partizan will not be able to manage your participation in the Zephyr Program and, as a result, you may not be able to participate.
When Partizan discloses your personal information
Partizan may disclose your personal information to organisations outside of Partizan, solely in connection with the provision and administration of the Zephyr Program, including to allow those organisations to provide or assist with:
- patient enquiries;
- mailing operations;
- healthcare services (e.g. home visits); and
- information technology services.
Data Sharing with Biogen
Help Partizan to ensure we hold accurate information
Partizan takes all reasonable precautions to ensure that the personal information Partizan collects, uses and discloses as part of the Zephyr Program is accurate, complete and up-to-date. However, the accuracy of that information depends to a large extent on the information you and others provide to Partizan. That’s why Partizan recommends that you:
- let Partizan know if there are any errors in your personal information; and
- keep Partizan up-to-date with changes to your personal information such as your name or address. If you are a subscriber to one of the online services, you may change your personal details by using the relevant facility on that website.
Security and retention of your personal information
Partizan may hold your personal information in a number of ways, including electronically and in paper format. Partizan takes reasonable steps to protect such personal information from misuse, interference, loss and unauthorised access, modification or disclosure. Personal information that we hold on our systems is protected through the use of secure passwords and other security procedures. Access to personal information is limited to those who specifically need it to conduct their business responsibilities for the purposes of the program.
Partizan also maintains physical security procedures to manage and protect the use and storage of paper records containing personal information.
Partizan requires its personnel to handle personal information in accordance with all applicable privacy laws.
Partizan will keep your information as required in connection with the administration and management of the Zephyr Program. Partizan will take reasonable steps to destroy or permanently de-identify personal information when Partizan no longer needs it.
You can access and correct your personal information by contacting Partizan (contact details below).
You have a right to access and ask Partizan to correct your personal information, subject to some exceptions, as prescribed by law. If you would like to do so, please let Partizan know. You may be required to put your request in writing for security reasons.
If you have a complaint
If you have any complaints about Partizan’s privacy practices or procedures, Partizan asks that you contact Partizan or Biogen in writing at the contact points below. We will promptly acknowledge and investigate complaints.
How to contact Partizan or Biogen:
Address: The Privacy Officer
Partizan Worldwide Pty Ltd
PO Box 6032
Phone: (+61) 2 8373 7400
Address: The Privacy Officer
Biogen Australia Pty Ltd
PO Box 380
North Ryde BC
Phone: (+61) 2 8875 3900
For more information, call The Zephyr Team on 1800 ZEPHYR (1800 937 497).