Summary
The Department of Health and Ageing (DoHA) commissioned the Australian Institute of Health and Welfare (AIHW) to undertake a study to investigate and document the scope, feasibility and usefulness of setting up a Carers National Data Repository (CNDR). The CNDR is conceived as a way of improving the evidence available about carers, using existing data. This would mitigate issues arising from scattered evidence by bringing data together, standardising metadata and analysing data in more integrated ways (including through the use of data linkage) to inform important policy and research issues.
Support in principle for a CNDR was received from the majority of stakeholders, and was strongest from advocacy groups. This was primarily based on recognition of a strong need for better evidence which would facilitate improved carer services and support arrangements. Underpinning this was acknowledgment of a need for wider data access and research relating to carers. However, data custodians expressed concerns about privacy, data quality and access, technical expertise and issues such as the physical format and transmission of data.
Three repository models were proposed by and discussed with stakeholders during the consultation process. These included a repository of metadata only, without storage of data; a virtual 'hub' from which web-based access can be gained to data held by data custodians; and a physical data repository, with data collections or copies centrally located, incorporating a program of data development and analysis.
While the metadata directory model would receive support from all stakeholders, including most data custodians, the benefits of establishing a repository of this type would be limited, particularly in view of the potential resources required to establish and maintain it. It is not certain that either of the other models for the CNDR would receive sufficient support from data custodians at this time to make them feasible.
A physical CNDR offers the most potential for achieving strong gains in the quality and visibility of evidence about carers, particularly if it incorporates the capacity to develop expertise in data linkage and integrated data analysis. Its feasibility and value should be reviewed in future. The way forward in the short term would appear to lie in:
- a coherent program of regular data analysis and reporting using existing data, including developing Statistical Linkage Key (SLK) capability for carer data across data collections. This work could be considered for inclusion on the work plan of the National Community Services Information Management Group (NCSIMG).
- improving the coverage, quality and consistency of carer data. The NCSIMG strategic plan for 2005-2009 specified that a review of existing collections relating to informal care was a priority for action. With the expiry of the current strategic plan and the development of an updated one, it is important that such a review remains a priority.
- closing some of the gaps in data available to inform key issues though enhancement of existing data collections and potentially developing new data collections with a stronger focus on gathering data from carers about their needs and circumstances.
The renewed emphasis on performance reporting as part of the Council of Australian Governments' reforms will have an impact on data development and reporting over the next few years, including for carer data which features prominently in the new National Disability Agreement. These developments increase the desirability of consistency in carer data items across existing data sets and making maximum use of existing data.