*2.2. Disability*

The AIHW is working in partnership with national and state-level governments to integrate governmen<sup>t</sup> data to develop a National Disability Data Asset (NDDA). This project brings together deidentified data from over 50 datasets, sourced from all levels of government, to build a linked administrative data asset that can support reporting under the outcomes framework of a new National Disability Strategy (NDS).

The NDDA is currently in its pilot phase, which is focused on developing processes for sharing data among governmen<sup>t</sup> data custodians, to gain a better understanding of people's life experiences. Analyses of five public policy topics are being used to demonstrate the potential of using linked data, as well as to inform design for a potential enduring asset. These topics include early childhood support, experiences with the justice system, pathways from education to employment, and services and support for people with disability and mental health issues. The pilot phase aims to derive a comprehensive measure of disability and demonstrate how linked administrative data can support an outcomes framework under the NDS.

This pilot builds on AIHW's health and welfare data expertise, which has supported NDDA delivery partners to develop and capture previously unavailable information on people with disability. The complexity of negotiating ethical approval, navigating Australian governmen<sup>t</sup> legislation requirements, and ensuring privacy compliance of personal information has proven challenging. As the integrating authority for the pilot phase of the NDDA, the AIHW has established rigorous end-to-end data governance and managemen<sup>t</sup> arrangements in accordance with privacy, legal, and technical aspects of the supply, to ensure that data of value can safely be included in the asset. A key achievement is the collaboration among the AIHW, the Australian Bureau of Statistics (ABS), and state governmen<sup>t</sup> partners to create the pilot dataset.

Early learnings from the pilot include the potential to improve data sharing arrangements by streamlining governance and leveraging existing data integration infrastructure at a national level. A system that facilitates delivery of timely and relevant data will inform national priorities and support improved policy development, program design, and service delivery for people with disability.

Research findings on the five topic areas will be available in late 2021. Learnings from the pilot will inform options for an enduring data asset beyond 2021, including priority data for inclusion, data integration models, approved uses of the NDDA, and appropriate governance models for the asset.

#### *2.3. Health Service Use: Last Year of Life*

The AIHW is using the National Integrated Health Services Information (NIHSI) integrated data asset to examine health service use patterns and their corresponding costs for Australians who lived their last year of life between 2011–2012 and 2016–2017. The project aims to identify key factors related to the variability in the patterns of health service use in the last year of life. The key factors may include patient characteristics of age, sex, remoteness, socioeconomic group, and cause of death. Comparisons will be made to the health service use of the rest of the population (those who did not die) with otherwise similar characteristics.

Key analysis datasets used in this project are the National Death Index (NDI) linked to data on health service use, pharmaceutical prescriptions, and hospital, emergency department, and residential aged care.

Results from this analysis will provide information on Australians' interaction with a range of health services prior to death. They will help to identify the characteristics of Australians who are not accessing the services they need in their last year of life. This will provide useful information for healthcare professionals and policymakers.

Analyses for both service utilization and costs are underway, with an interactive web report planned for release in late 2021.

#### *2.4. Patient Experiences of Continuity of Care*

The AIHW developed the Coordination of Healthcare (CHC) study in partnership with the ABS to fill an important data gap and provide information on patients' experiences of continuity of care across Australia [5]. The study, which included people aged 45 and over, used a survey and data integration to examine patient experiences of continuity of care across Australia and importantly by the Primary Health Network [6]. The survey collected self-reported experiences of health service use including general practitioners (GPs), specialists, hospitals, and emergency departments. It also asked about health status including long-term health conditions, medication use, and sociodemographic characteristics.

Responses from consenting participants were linked to their administrative health data, including health service use and pharmaceutical prescription data, plus hospital and emergency department data for the pre- and post-survey period. The resulting integrated dataset provides a unique source of information on patient experiences, health status, and service use data [7]. This data linkage has enabled researchers to quantify and describe the actual use of health services (such as GP and hospital visits) and compare it with self-reported data on people's experiences of healthcare.
