Privacy information - Queensland RHD Register

Overview

The Queensland Rheumatic Heart Disease Register (Register) is a list of people who have acute rheumatic fever and rheumatic heart disease, also called ARF and RHD.

This page explains how Queensland Health collects, uses, protects, and shares your personal information if you are included in the Register. It also outlines your rights and choices.

People diagnosed with ARF or RHD are automatically included on the Register unless they choose to opt out. This helps ensure timely care for better health outcomes.

Privacy

Queensland Health completed a privacy impact assessment for the Register. This looked at how personal and confidential information moves in and out of the Register, and any privacy risks.

To learn more, read the Privacy Impact Assessment (PDF 298 kB) summary.

How am I added to the Register?

• When you are diagnosed with ARF or RHD, your details are automatically added to the Register.
• ARF and RHD are diseases that must be reported to Queensland Health. This is required by law under the Public Health Act 2005.
• When a person is diagnosed, the doctor fills out a form and sends it to Queensland Health. The information goes into a secure system called the Notifiable Conditions System (NoCS).
• There are legal approvals that allow the Register to add patients using information reported to Queensland Health under the Public Health Act 2005. These approvals come from section 81 of the Public Health Act 2005 and section 160 of the Hospital and Health Boards Act 2011.
• The Register uses an opt out model. This means that people are included on the Register unless they choose not to participate.

How is my information collected?

• When you are diagnosed with ARF or RHD, get needles, have heart tests or see a doctor for ARF or RHD that information may be sent to the Register by your health clinic.
• The staff at the Register may contact your clinic for more information about your treatment.
• Your details may also come from other Queensland Health records if you had treatment at a public hospital, primary health care centre or community clinic.
• Information may also come from a Register in another state or territory.

What information is collected?

The Register only collects information relevant to your care and management of ARF or RHD. This may include:

• your name and contact details
• your date of birth
• your clinical history, diagnosis, and treatments; and
• details about your doctors or clinics.

For more information, see types of information collected

Why is your information collected?

The RHD Register helps healthcare providers to:

• support your clinical care and follow-up
• know when your care is due or overdue
• monitor trends and improve services.

Who is my information shared with?

• Your information may be shared with healthcare providers involved in your care and authorised Queensland Health staff.
• De-identified information may be shared with health services for planning, evaluation or research purposes. Researchers must make an application under the Public Health Act 2005.
• Some information from the Register is sent to a national system to help health services understand and reduce ARF and RHD in communities. This information does not include names and addresses, it includes things like:
  • where and when people are diagnosed
  • how old people are and what gender they are (like male, female or another gender)
  • where people get their treatment
  • if people are getting their needles and heart checks; and
  • if they had surgery for RHD.

You can learn more about the national system on the Australian Institute of Health and Welfare webpage: National Rheumatic Heart Disease data collection (aihw.gov.au)

Your choices and rights

You have the right to leave (opt out) of the Register at any time. If you choose to opt out, your identifiable information will no longer be actively used in the Register.

You can also choose to rejoin the Register later if you change your mind.

To learn more about your options, visit Stay or leave the Queensland RHD Register.

Types of information collected

The following table outlines the types of personal information collected for the Register, and how this information may be used or disclosed in accordance with Queensland legislation and health policy.