Queensland RHD Register

People living with acute rheumatic fever and rheumatic heart disease, otherwise known as ARF and RHD, usually require regular long term antibiotic treatment and specialist care to prevent further damage to the heart. The burden of disease often spans the majority of a person's lifetime, starting with ARF in childhood, where engagement with the healthcare system is needed for many, many years and progressing in many cases to RHD, and associated heart conditions during adulthood.

The Queensland RHD Register performs an important function as a centralised repository of patient information, and for supporting healthcare providers, with timely reminders to follow up patients due for care. Healthcare providers play a crucial role in informing patients when they have been added to the Register and informing the Register of updates to patient’s treatment, management and service provider. The purpose of this video is to share information about the Register, how it benefits patient care, and the role healthcare providers have to our communities.

The Queensland Rheumatic Heart Disease Register is a secure, statewide disease database that supports healthcare providers with the long-term management of patients living with ARF and RHD. Benefits of the Register include centralised patient information from primary, secondary and tertiary health services, prompts for healthcare providers to follow up patients who are due or overdue for treatment or review, facilitates sharing of information, including the transfer of patient information between healthcare services, and improves visibility of disease burden and health service requirements in Queensland.

ARF and RHD, are notifiable conditions in Queensland under the Public Health Act and diagnosing clinicians are required to complete and submit notification forms relevant to each condition. Notification forms are added to the Notifiable Conditions Register and allocated to the local Public Health Unit. Once confirmed by the Public Health Unit, the patient's information is sent from the Notifiable Conditions Register to the RHD Register to support ongoing care.

Details provided on the notification form are used to commence Register follow up reminders to healthcare providers and send patient information from the Register to The Viewer.

Information collected on the Register includes patient and healthcare provider details, diagnosis, disease severity and clinical management plans, dates of secondary prophylaxis injections, echocardiograms, specialist reviews and pregnancy and surgery details relating to RHD.

Information on the Register is collected according to the Australian guideline for prevention, diagnosis and management of ARF and RHD. Initial information comes from the Notifiable Conditions Register when a diagnosis is confirmed, and ongoing treatment, management and movement updates are received by the Register from healthcare providers involved in a patient's care. Information may be obtained by Register staff from healthcare providers and other Queensland Health systems.

Information on the Register is used to prompt healthcare providers to follow up patients who are due or overdue for treatment or review. Monthly recall lists are sent for Benzathine Benzylpenicillin G, also known as BPG or Bicillin, and quarterly recall lists are sent for echocardiograms. Certain information is sent to The Viewer, allowing healthcare providers timely access to patient information.

De-identified information is reported to the Australian Institute of Health and Welfare for reporting on ARF and RHD in Australia, and information on adherence rates and disease severity is used to inform and evaluate health services to improve health outcomes. Healthcare providers can request patient information from the Register by contacting the Register team by email or telephone. Queensland Health employees involved in managing ARF and RHD can request direct access to the Register.

All Queensland Health employees and eligible clinicians working external to Queensland Health can access information through The Viewer. Information on The Viewer includes: a pop-up alert for patients that have a history of ARF or RHD, and on the Care Plans tab, a patient's diagnosis, care plan, disease severity, secondary prophylaxis, and echocardiogram details.

Healthcare providers can update patient information on the Register by email, telephone or fax, or by completing and returning the BPG and echocardiogram recall list with relevant patient information.

A patient can choose to opt out and rejoin the Register at any time. This can be done by completing the online form, contacting the Register directly, or by asking their healthcare provider to do so on their behalf. If a patient opts out, the Register will stop recording and sharing that patient's information, and reminders to the patient's healthcare provider will cease.

The Register will notify the patient's healthcare provider that their patient has opted out, and to stop sending patient information to the Register. If a patient rejoins, recording and sharing of information and reminders to healthcare providers will recommence. The Register may request certain information to complete the patient's record. It is important to note that a patient can choose to continue clinical management for their condition, irrespective of their inclusion on the Register.

This decision should be discussed between the patient and their healthcare provider.

Healthcare providers should inform their patients about the Register when they're first diagnosed or during follow up care. This includes explaining to patients that when they are diagnosed with ARF or RHD, they are automatically added to the Register, what the Register is, how the Register supports their care and that they can opt out and rejoin the Register at any time.

Information should be provided in a culturally appropriate way, such as in an environment in which the patient feels comfortable and where appropriate, in collaboration with culture support staff or an Aboriginal and/or Torres Strait Islander health worker. Resources are available online to support healthcare providers when speaking with their patients about the Register. And remember, healthcare providers and the Register together play a vital part in our fight to prevent RHD in our communities and for our mob.

Visit the Register website for more information and resources.