Privacy of patient information in ABDR and MyABDR

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) (357.53 KB)

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

Attachments to the ABDR/MyABDR Privacy Policy:

Patient information brochure (pdf) (116.36 KB)

Patient information brochure (docx) (465.38 KB)

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

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

Patient registration form (pdf) (84.17 KB)

Patient registration form (docx) (205.67 KB)

HTC implementation protocol (pdf) (115.27 KB)

HTC implementation protocol (docx) (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) (361.64 KB)

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

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

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

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

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

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

ABDR/MyABDR privacy consent step-by-step guide - web application (docx) (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) (91.21 KB)

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

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

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

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

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

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

ABDR/MyABDR privacy collection notice and consent form using pseudonym (docx) (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):
  • For more information on MyABDR and ABDR, you can also: