Patient information in the Australian Bleeding Disorders Registry (ABDR) and MyABDR is collected and managed in a way which complies with the Commonwealth Privacy Act 1988 and parallel requirements under state and territory laws.  Privacy requirements under the Privacy Act were tightened in 2014, and a new ABDR/MyABDR Privacy Policy applies from 26 January 2015.

This page provides information about the management of patient privacy in ABDR and MyABDR, including the ABDR/MyABDR Privacy Policy and further information, forms and other implementation resources.

ABDR/MyABDR privacy policy and privacy consent form

A patient’s personal information may be entered into the ABDR, either at a Haemophilia Treatment Centre (HTC) or when a patient enters data directly via MyABDR, and becomes part of an electronic record about the patient’s bleeding disorder condition.

In accordance with the ABDR/MyABDR Privacy Policy (linked below), a patient’s consent is required for the recording of their data in ABDR (consent may be given by a parent, guardian or authorised representative where relevant).

To ensure that each patient is fully informed and understand what they are consenting to, they will receive a detailed privacy collection notice (linked below)which sets out how their personal information is collected, used, disclosed and protected by the NBA. This notice may be provided as a printed notice and form when the patient visits an HTC, or through the MyABDR application.

The requirement for consent for ABDR/MyABDR data recording applies:

• for all new patients
• for all patients using MyABDR to record data, from the first time they log in
• through a progressive transition process for existing patients that commenced on 26 January 2015 for future data collection for patients whose data is already being recorded in ABDR.​

ABDR MyABDR privacy policy (icluding attachments) (pdf) [2] (357.53 KB)

ABDR/MyABDR privacy policy (including attachments) (docx) [3] (1.41 MB)

Attachments to the ABDR/MyABDR Privacy Policy:

Patient information brochure (pdf) [4] (116.36 KB)

Patient information brochure (docx) [5] (465.38 KB)

ABDR/MyABDR privacy collection notice and consent form (pdf) [6] (79.09 KB)

ABDR/MyABDR privacy collection notice and consent form (docx) [7] (193.39 KB)

Patient registration form (pdf) [8] (84.17 KB)

Patient registration form (docx) [9] (205.67 KB)

HTC implementation protocol (pdf) [10] (115.27 KB)

HTC implementation protocol (docx) [11] (194.27 KB)

Other information for patients

The following resources have been developed to provide further information and assistance to patients and their parents, carers, guardians and authorised representatives:

 

ABDR/MyABDR Consent to Privacy - leaflet (pdf) [12] (361.64 KB)

ABDR/MyABDR Consent to Privacy - leaflet (doc) [13] (529.5 KB)

ABDR/MyABDR and privacy consent consumer information leaflet (pdf) [14] (251.88 KB)

ABDR/MYABDR and privacy consent consumer information leaflet (docx) [15] (529.5 KB)

ABDR/MyABDR privacy consent step-by-step guide - mobile application (pdf) [16] (1.46 MB)

ABDR/MyABDR privacy consent step-by-step guide - mobile application (docx) [17] (2.92 MB)

ABDR/MyABDR privacy consent step-by-step guide - web application (pdf) [18] (1.58 MB)

ABDR/MyABDR privacy consent step-by-step guide - web application (docx) [19] (3.48 MB)

Haemophilia Treatment Centre resources

The following additional resources have been developed to assist with implementation of the ABDR/MyABDR Privacy Policy and ongoing management of patient privacy requirements at HTCs:

ABDR/MyABDR privacy collection notice - with space for patient ID sticker (pdf) [20] (91.21 KB)

ABDR/MyABDR privacy collection notice - with space for patient ID sticker (docx) [21] (150.19 KB)

ABDR/MyABDR privacy consent verbal consent script and verbal consent form (pdf) [22] (86.32 KB)

ABDR/MyABDR privacy consent - verbal consent script and verbal consent form (docx) [23] (23.93 KB)

ABDR/MyABDR privacy consent - important points for use of pseudonym (pdf) [24] (75.23 KB)

ABDR/MyABDR privacy consent - important points for use of pseudonym (docx) [25] (189.79 KB)

ABDR/MyABDR privacy collection notice and consent form using pseudonym (pdf) [26] (91.45 KB)

ABDR/MyABDR privacy collection notice and consent form using pseudonym (docx) [27] (150.19 KB)

Further information

• Talk to your doctor or nurse at your Haemophilia Treatment Centre

• Talk to the ABDR support team at the National Blood Authority (NBA):
  • Visit www.blood.gov.au/abdr [28]
  • Call 13 000 BLOOD (13 000 25663) 
  • Email abdr@blood.gov.au [29]

• For more information on MyABDR and ABDR, you can also:
  • Visit www.haemophilia.org.au/myabdr [30]
  • Call 1800 807 173
  • Email hfaust@haemophilia.org.au [31]

• For information on the NBA privacy policy including how complaints can be made visit:​
  • www.blood.gov.au/privacy [32]