The Australian and New Zealand Massive Transfusion Registry: An innovation focusing on data collection, standardisation and interoperability between healthcare systems

Background: Blood transfusion is a common medical intervention. For patients with acute critical bleeding, large volume “massive” transfusion (MT) is required, and is potentially life-saving. However, the evidence-base for transfusion practice, particularly for critical bleeding/MT management, is relatively weak, and has confounded the development of clinical best practice recommendations. Aim: The aim was to address this evidence gap by building the Australian and New Zealand Massive Transfusion Registry (ANZ-MTR). We describe how data collection, standardisation and interoperability of data sourced from multiple electronic information systems are managed, and share the lessons learned. Innovation: The ANZ-MTR is a database of routine electronic hospital admission information, laboratory test results, transfusion records and outcomes of adults (18 years and older) who have received a MT for any cause of acute critical bleeding, including trauma, major surgery, obstetric or gastrointestinal haemorrhage. Source data are provided by participating hospitals and are harmonised by the registry. Since its launch in 2011, the ANZ-MTR has captured over 9200 MT episodes from 29 hospitals. What can be learned from this case: Effective communication with all custodians of the source data has been fundamental to the success of the registry. A preeminent outcome of this success is the current expansion of the registry to become the National Transfusion Dataset, which will capture comprehensive data for all transfusions. Implications for health information management practice: The ANZ-MTR illustrates that complex and varied arrays of routinely collected clinical and hospital administrative data from multiple electronic information systems can be consolidated into a resource-rich clinical database.