The National Blood Agreement notes that data and information requirements for the sector fall in three broad areas of:
- Supply – which covers the manufacture, distribution, receipt, management and use of blood and blood products
- Clinical – data generated in this area contributes to improving health outcomes. This can be at an individual patient level (eg data on an individual’s clinical usage of product and the outcomes) or in broader clinical groups (eg to influence guideline development)
- Sector Management – data generated is essential to managing and optimising effectiveness and efficiency of supply, predicting demand, contingency planning and organising supply and logistics.
Importantly, blood sector data must be able to provide data to inform the broader health sector accountability, performance and outcomes requirements.
The over-riding purpose of all data collections is to help meet the National Blood Agreement objectives, namely to provide robust data to allow stakeholders to:
- measure the past and current performance of the sector in terms of product issuage, usage, production, inventory levels and wastage
- identify for what, and where, blood products are used and compares Australian performance both domestically and with international benchmarks
- model future expected performance and trends
- capture and record data elements needed by jurisdictions for their accountability requirements
- measure treatment regimens and patient outcomes
- identify patterns and usage trends of products, including areas of high variability and high usage
- contribute evidence that will inform future guidelines and management decisions
- provide data and information to allow governments to make sound, well informed decisions
- inform and supports changes to government policy.
A significant amount of data and information exists within the Blood Sector, however, the extent to which this data is currently available to the parties that need it, the quality of the data, and the capacity of the systems that hold it, varies widely. The majority of data/information is held either in supplier’s systems or hospital systems.
In general, information within supplier’s systems is (relatively) easily accessible – the systems are typically electronic and core to the supplier’s business. Information from hospital systems is much less accessible and in some cases, is not in an electronic form (for example patient notes) and is therefore extremely difficult to access. In addition, there is limited standardisation of what information is captured, how it is defined, stored and accessed, and limited standardisation of the hospital systems themselves. Jurisdictional variation in technology is also wide, with some jurisdictions moving towards standard, state wide hospital systems;
Information from and collected in existing hospital systems may require national data linkage projects to be established with the aim of producing nationally consistent datasets of, and ultimately national reports on, blood product use in Australia. An important precursor of the work will be the identification of the currently available data sets, along with the data gaps within the sector
In addition to the existing systems within the sector, there are a number of national systems currently in development or being rolled out to health providers at various stages (BloodNet and ABDR) which are likely to positively impact data availability. Their use and the data that they can capture is illustrated in the table on the Blood Systems page.