Privacy notice for the National Epidermolysis Bullosa Dressing Scheme – patients

Find out how we manage any personal information we collect about you when you apply for the National Epidermolysis Bullosa Dressing Scheme (NEBDS).

This notice explains how the NEBDS administrator (on behalf of the Australian Government Department of Health) manages personal information consistent with our obligations under the Privacy Act 1988 and the Australian Privacy Principles (APPs).

What information will we collect?

We collect personal information about you, including your:

  • name
  • date of birth
  • gender
  • Medicare number
  • contact details
  • address
  • any concession cards you hold
  • diagnosis, follow-up schedule and dressing requirements

Why do we collect this information?

We need this information to:

  • determine if you are eligible to receive subsidised products and other support under the NEBDS
  • provide products and support available under the NEBDS to approved applicants

If you do not provide your personal information, we may not have the information we need to:

  • decide if you are eligible
  • provide you with products and support under the NEBDS

How do we collect this information?

We collect your personal information via the program’s application form:

  • directly from you, and
  • from your approved health care professional

Who will we disclose your personal information to?

We may disclose your information to:

  • the Department of Human Services (Medicare) to check your eligibility
  • anyone you’ve agreed we can share with
  • anyone the law requires us to share with

We are unlikely to disclose your personal information to overseas recipients.

How will we store your information?

The NEBDS administrator will store your information electronically in secure databases. If we are required to keep hard copy documents, they are stored in secure filing systems. Only authorised NEBDS administrator staff have access to your personal information. When we no longer need it, or when required by law, we will destroy or de-identify your information.

How do we handle sensitive information?

By submitting the application form, you agree to us collecting sensitive information about:

  • your Aboriginal or Torres Strait Islander descent (optional question)
  • medical diagnosis
  • medical dressing requirements

We will use it as stated in ‘Why do we collect this information?’

How can you access or correct the personal information we store about you?

You can contact the NEBDS administrator to access your personal information and correct it if it is wrong. Their privacy policy includes more information about this process.

Concerns or complaints?

The Department of Health’s privacy policy contains information about how you can make a complaint if you think we have breached:

  • the Australian Privacy Principles, or
  • the Australian Government Agencies Privacy Code

The privacy policy also explains how we will manage your complaint.

More questions?

For more information see:

The privacy policies explain what to do if you have a complaint about privacy matters.

National Epidermolysis Bullosa Dressing Scheme administrator

Contact the National Epidermolysis Bullosa Dressing Scheme (NEBDS) administrator for help with the costs of epidermolysis bullosa (EB) treatment.

General enquiries
eb [at] iagroup.org.au
Privacy officer
privacy [at] independenceaustralia.com
General enquiries
Privacy officer

View contact

Departmental privacy enquiries

Contact to find out more about privacy within the Department, or to make a privacy enquiry or complaint

Privacy officer
privacy [at] health.gov.au
Freecall
Postal addresses: 
Department of Health
MDP 62
GPO Box 9848
Canberra ACT 2601

View contact

Last updated: 
3 March 2020

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