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Rheumatic Heart Disease Australia

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Surveillance & Quality Improvement

Data Collection System

The Data Collection System (DCS) is the central repository for the collection and reporting of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) data against a recommended clinical data set and key performance indicators.

Quality data collection and reporting systems will support sustainable improvements in the provision of evidence based care and outcomes for patients with ARF and RHD. The DCS will generate high quality, accurate mandatory reports to the Australian Government’s Department of Health, the Australian Institute of Health and Welfare and provide analytical reports to support the jurisdictional RHD Control Programs.

 

Why was the Data Collection System established?

ARF and RHD data is already collected through the RHD Control Program registers in Queensland, the Northern Territory, South Australia and Western Australia. The DCS was established to ensure consistency and quality in data collection and reporting across the jurisdictions. The DCS only collects and reports on data from the jurisdictional registers currently funded under the Australian Government’s Rheumatic Fever Strategy.

 

How does the DCS support the RHD Control Programs?

A key component of the DCS project is to improve data quality and integrity and analysis and reporting capabilities with the RHD Control Programs. RHDAustralia works with the participating jurisdictions to:

  • Improve the quality and integrity of their data so the DCS can generate high quality, accurate analytical reports and identify gaps in current reporting capabilities.
  • Produce analytical reports which will be used to measure the impact of state based registers and monitor the performance of control measures; benchmark jurisdictions against their own performance, that of other jurisdictions and international best practice; and support sustainable improvements in the provision of evidence based care and patient outcomes.

RHDAustralia has a Data Liaison Officer who assists with improvements to data collection and validation processes and an Epidemiologist who provides expertise in the development of surveillance data derived from the DCS.

 

What are the key performance indicators and data set specification?

The Australian guideline for the prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease (2nd edition) recommends a set of key performance indicators and a clinical dataset. The DCS project has refined these indicators and dataset with expert advice from the Data Management Committee.

The data set specification describes data recommended for collection at jurisdiction level in relation to cases of ARF and RHD. Only data needed to create reports to meet the key performance indicators will be collected by the DCS. Data elements within the DCS are a combination of national metadata standards and newly developed RHD-specific data elements. The RHD-specific data elements have undergone initial review within METeOR (Metadata Online Registry).

 

How is the data protected?

Data security was a priority in the development of the DCS and the system meets industry standards of data protection and privacy. The policies under which the DCS is managed require that information is used only for the purposes for which it was given. All data is collected, used, and stored in accordance with the Commonwealth Government Information Privacy Principles of the Privacy Act 1988.

The use of the data is strictly limited:

  • The data cannot be used for research purposes.
  • Jurisdictional data remains the property of the jurisdiction.
  • The data cannot be published or released without the appropriate approvals.

Data collected by the DCS is de-identified. Each patient is assigned a unique identification number for the purposes of transfer to the DCS and analysis. This will allow the patient to be re-identified by the source jurisdiction. Inclusion on RHD registers requires patient consent and each jurisdiction is responsible for ensuring the correct approvals and processes are in place.

 

How is the DCS project managed and governed?

The DCS is a key component of the Australian Government’s Rheumatic Fever Strategy. In its role as National Coordination Unit, RHDAustralia is responsible for the overall management of the DCS. The participating jurisdictions are required to contribute ARF and RHD data to the DCS under their agreements with the Australian Government and have entered into Service Level Agreements governing the provision and use of data.

The Data Management Committee (DMC) provides ongoing review of the DCS to ensure objectives are being met; makes recommendations to address issues of clinical interest, quality of care issues of significance arising from analysis of the data collected; and monitors the Data Collection System’s data quality management processes. The DMC membership comprises RHDAustralia staff and Advisory Committee members, RHD Control Program representatives and data managers, a remote area GP and a NACCHO representative.