Terms and Conditions

Last updated: 05 May 2022

MyABDR Terms and Conditions

Summary

  • MyABDR is a personal treatment recording tool and is not a substitute for direct contact with your Haemophilia Treatment Centre (HTC) or professional medical advice. It is essential that you attend a regular review with your doctor or HTC to make sure that the dose of product and treatment plan still suits your current situation. If you have any questions or concerns about your bleeding disorder, contact your HTC or nearest emergency medical centre for assessment and advice.
  • Once you register in MyABDR the information you input (including personal information) becomes a part of the Australian Bleeding Disorders Registry (ABDR). The ABDR is operated by the National Blood Authority (NBA), a Commonwealth Government Agency and is overseen by the ABDR Steering Committee, which includes in its membership the Australian Haemophilia Centre Directors' Organisation (AHCDO), NBA and Haemophilia Foundation Australia (HFA). The ABDR Steering Committee deals with issues such as privacy and data accuracy. The ABDR is a national system used by HTCs for clinical care of their patients and by the NBA for demand management and planning.
  • If you misuse the MyABDR system then your HTC may suspend or cancel your registration.
  • You must read the full terms and conditions and the privacy collection statement before you can complete the registration process for MyABDR.

Introduction

  1. Participating in MyABDR is completely voluntary. There are no consequences if you decide not to register.
  2. By registering you will have a quick and easy way to record bleeds, treatments at home, stocktake and update your contact details which will be added to the Australian Bleeding Disorder Registry (ABDR). All of these details will be saved on a secure app and computer website.
  3. You can register for MyABDR if you are a registered patient on ABDR and have been diagnosed with haemophilia A, haemophilia B or other factor deficiencies including fibrinogen, all types of von Willebrand Disease (VWD), platelet dysfunction, acquired factor VIII inhibitor, acquired von Willebrand Disease and some vascular disorders. You can also register on MyABDR if you are an authorised representative (such as caregivers or parents of a minor child or minor children) of a registered patient on the ABDR.
  4. MyABDR forms a part of the ABDR which is operated by the National Blood Authority (NBA), a Commonwealth Government Agency. This national system is used by HTCs for clinical care of their patients. The ABDR is overseen by the ABDR Steering Committee, which includes the Australian Haemophilia Centre Directors' Organisation (AHCDO), NBA and Haemophilia Foundation Australia (HFA) in its membership and deals with issues such as privacy and data accuracy.
  5. Please note that if the MyABDR system is interrupted for any reason you should record your bleeds, inventory and or treatment in the paper diary provided by your HTC. Those details can then be updated into the MyABDR system once the system is operational.
  6. Compliance with the following user conditions by all MyABDR users is essential to maintaining the integrity and useability of MyABDR, ABDR and the privacy of people with bleeding disorders and other individuals whose personal information is stored in ABDR. The NBA may make changes to these terms and conditions from time to time. If those changes impact on your rights or responsibilities as a MyABDR user the NBA will notify you and ask you to accept new terms and conditions of use before you can get access to MyABDR.
  7. When you register for MyABDR you will need to specify one or more person that has a bleeding disorder for registration and, if you are applying for access to someone else's information, your relationship to that person. This will help to define your access rights. You must notify your HTC promptly of any change in circumstances for the person with bleeding disorder that you have specified on the User Registration Form and/or your authorisation to access the system on their behalf (e.g. changes to custody, person with bleeding disorder reaching adulthood and/or becoming independent, etc).
  8. As a MyABDR user you will be required to give a unique email address for your user name and will be provided with a temporary password to log on to MyABDR. You will be asked to change your password before you can use the mobile or website application.
  9. No one else has your login details (other than authorised MyABDR support personnel for proper system or user administration purposes). You should keep your login details secret so that no one else can access your information. If you detect any unauthorised access, it should be reported as soon as possible. You can call 13 000 BLOOD (13 000 25663) or email support@blood.gov.au if you have any issues with your account including concerns about unauthorised access.
  10. Each MyABDR user is authorised to access and use MyABDR for the purposes of: recording personal contact details and treatment information to assist with condition management; supporting the communication with suppliers of clotting factor product for home delivery arrangements which may extend to overseas in some circumstances; and Australian government agencies responsible for product supply arrangements. You must only access or use MyABDR data for these purposes.
  11. As a MyABDR user, you are required to comply with instructions for the proper use of MyABDR, or procedures associated with the use of MyABDR, notified to you via the HFA, the NBA via the MyABDR System Administrator or by health care professionals authorised to activate and manage your user account, at any time.
  12. In particular, you must:
    • enter your data correctly;
    • acknowledge that you have received and understood the ABDR/MyABDR Patient Pamphlet and these terms and conditions which include the Privacy Collection Notice;
    • notify MyABDR problems to your HTC or MyABDR Support;
    • inform the MyABDR support line immediately if you suspect that the security of your MyABDR account has been compromised (e.g. your user name or password has been lost or there has been an unauthorised use of your account); and
    • ensure data security when utilising the MyABDR Phone and Web applications.
  13. The information you provide when registering and using your MyABDR account must be complete and accurate to the best of your knowledge when you provide it. If you supply incomplete, inaccurate or false information or otherwise misuse the system your HTC may decide to suspend or terminate your MyABDR account. Giving false or misleading information is also a serious offence. Where a user is found to have knowingly inputted false or misleading information into the MyABDR system, this may amount to a criminal offence punishable by up to 12 months imprisonment under Division 137.1 of the Criminal Code Act 1995 (Cth).

Your Privacy

  1. As part of your MyABDR application, you will need to provide information about yourself so that the HTC on behalf of the ABDR SC can identify who you are, can work out whether you can be registered and to manage your user account. The data collected is all necessary for those purposes. In addition, if you are seeking to register as an authorised representative of another person with a bleeding disorder then further identity information may be sought by your HTC to verify your identity and your authority to register and access MyABDR on that person’s behalf prior to your account being activated. When you register or forget your user ID or password, your phone number and user ID will be disclosed to an overseas third party engaged by the NBA to provide you with your user ID or issue you a temporary access code to allow a password reset. Under the terms of engagement, the third party may only use your personal information to support you accessing your account.
  2. If you choose not to provide some or all of the mandatory information for MyABDR registration then unfortunately you will not be able to access the system.
  3. The entity collecting your personal information for registration and system management purposes is the NBA on behalf of HTCs. You can find out more about the NBA and make enquiries and requests relating to your personal information by emailing privacy@blood.gov.au.
  4. Once registered, you can enter personal details, treatment and product inventory via MyABDR. This information forms a part of your ABDR record. The ABDR is an electronic medical record which is accessed and updated by specialists for clinical purposes when you receive treatment for your condition and the administrative support and ABDR support section of the HTC for the purposes of maintaining and updating your record. Specially selected NBA technical support/helpdesk staff authorised by the ABDR Steering Committee, may also need to access this record but only for the purposes of supporting and maintaining the ABDR.
  5. For more information about why and how your personal information is collected, usual use and disclosure of that information and how to seek access, correction or make a complaint about the way your personal information is handled the MyABDR Privacy Collection Notice is available at http://www.blood.gov.au/abdr/. The Privacy Collection Notice forms a part of these terms and conditions. You must read this before registering to be a user of MyABDR.
  6. If you would like to understand how the NBA manages personal information generally you can also view the Agency's complete privacy policy by visiting http://www.blood.gov.au/privacy.

Legal requirements and disclaimer

  1. If you breach these terms and conditions of use, the HTC may decide to suspend or terminate your MyABDR account.
  2. The NBA does not guarantee the quality of the MyABDR and ABDR and accepts no liability for any loss, expense, injury or damage that occurs as a result of using the MyABDR and ABDR system or in connection with that system, regardless of how that loss, damage, expense or injury arises. The NBA is unable to guarantee the accuracy, currency, completeness or relevance of the material contained within MyABDR or the ABDR.
  3. If any of these terms of use are held to be invalid, unenforceable or illegal for any reason, the remaining terms will continue in full force.
  4. These terms and conditions of use are governed by the laws in force in the Australian Capital Territory, Australia and by accepting these conditions you are agreeing to submit to the jurisdiction of the courts of the Australian Capital Territory.
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