Privacy notice for the Inborn Errors of Metabolism program – patients

Find out how we manage any personal information we collect about you when you apply for funding under the Inborn Errors of Metabolism program.

This notice explains how we (the Australian Government Department of Health) manage 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 your (or your child’s):

  • name
  • address
  • contact details
  • banking details
  • signature
  • gender
  • date of birth
  • residency
  • Medicare number
  • diagnosis
  • relationship to the person with IEM and any relevant custody arrangements

Why do we collect this information?

We need this information to:

  • determine if you are (or your child is) eligible to receive financial assistance under the program
  • administer the payments to you

If you do not provide your personal information, we cannot decide if you are (or your child is) eligible or pay you.

How do we collect this information?

We collect personal information directly from you, via the application form.

We will also collect your personal information from your approved metabolic specialist, via the same application form.

Who will we disclose your personal information to?

We may disclose your information to:

  • the Department of Human Services, to confirm your Australian residency and Medicare enrolment status
  • 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?

We will store your information on electronic media, including our Electronic Document and Records Management System and cloud computing solutions. We also store personal information on paper files. Only authorised Health staff or contractors 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.

See our full privacy policy for more details.

How do we handle sensitive information?

By submitting the application form, you agree to us collecting health information about you (or your child).

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 us to access your personal information and correct it if it is wrong. The privacy policy includes more information about this process.

Concerns or complaints?

Our 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 our privacy page and our full privacy policy.

The privacy policy explains what to do if you have a complaint about privacy matters.

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]
Postal addresses: 
Department of Health
MDP 62
GPO Box 9848
Canberra ACT 2601

View contact

Last updated: 
3 March 2020

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