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Privacy of patient information in ABDR and MyABDR [1]

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]

Source URL: https://www.blood.gov.au/privacy-info-abdr-myabdr

Links
[1] https://www.blood.gov.au/privacy-info-abdr-myabdr
[2] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-policy-v1.pdf
[3] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-policy-v1.docx
[4] https://www.blood.gov.au/system/files/documents/patient-information-brochure.pdf
[5] https://www.blood.gov.au/system/files/documents/patient-information-brochure.docx
[6] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-and-consent-form.pdf
[7] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-and-consent-form.docx
[8] https://www.blood.gov.au/system/files/documents/patient-registration-form.pdf
[9] https://www.blood.gov.au/system/files/documents/patient-registration-form.docx
[10] https://www.blood.gov.au/system/files/documents/htc-implementation-protocol.pdf
[11] https://www.blood.gov.au/system/files/documents/htc-implementation-protocol.docx
[12] https://www.blood.gov.au/system/files/documents/adbr-myabdr-consent-to-privacy-leaflet.pdf
[13] https://www.blood.gov.au/system/files/documents/ABDR%20and%20privacy%20consent%20consumer%20information%20leaflet.doc
[14] https://www.blood.gov.au/system/files/documents/ABDR_and_privacy_consent_consumer_information_leaflet.pdf
[15] https://www.blood.gov.au/system/files/documents/ABDR_and_privacy_consent_consumer_information_leaflet.doc
[16] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-step-by-step-guide-mobile-app.pdf
[17] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-step-by-step-guide-mobile-app.docx
[18] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-step-by-step-guide-web-app.pdf
[19] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-step-by-step-guide-web-app.docx
[20] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-with-id-space.pdf
[21] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-with-id-space.docx
[22] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-verbal-consent-scriptform-v2-140115.pdf
[23] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-verbal-consent-scriptform-v2-140115.docx
[24] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-points-for-use-pseudonym_0.pdf
[25] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-consent-points-for-use-pseudonym.docx
[26] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-consent-form-with-pseudonym.pdf
[27] https://www.blood.gov.au/system/files/documents/abdr-myabdr-privacy-collection-notice-consent-form-with-pseudonym.docx
[28] https://www.blood.gov.au/abdr
[29] mailto:abdr@blood.gov.au
[30] http://www.haemophilia.org.au/myabdr
[31] mailto:hfaust@haemophilia.org.au
[32] https://www.blood.gov.au/privacy