**6. Conclusions**

In Australia, we are fortunate to have established population data sources with disability identifiers that are conceptually aligned with the ICF. This is a result of sustained resourcing by government, the work of statistical agencies (particularly ABS and AIHW), and active input from people with disability and other stakeholders. Nonetheless, important data gaps and limitations remain, hampering Australia's ability to develop effective policy responses to uphold the rights of people with disability, especially in relation to health and access to health services.

Moving forward to address these data gaps and limitations, the challenge is to develop an array of sources, with relatable data on disability. Clear articulation of the purpose for which data are to be used is crucial to guide any data development work, but particularly in relation to identifying people with disability, and deciding where and how to place 'cut points' along the continuum of functioning to define different groups. The corollary of this is that the purpose for which a particular data source has been designed must be understood and taken into account when considering secondary use of the data, including in the context of data linkage.

Disability data development should adhere to well-established principles, such as using data standards to promote quality and consistency, the importance of consultation, collaboration and field testing, being aware of the limitations of the data, and weighing the costs of data collection to all concerned against the value gained [17,95,96].

Building an effective evidence base to inform better policy and practice requires that data from different sources are relatable and have sound conceptual underpinnings; ICF remains the relevant standard framework in relation to disability. However, developing data is never merely a technical endeavour: there must always be consideration of the cultural, social, political and ethical dimensions, and the implications for those to whom the data relate. Crucially, people with disability and their representative organisations must be key players in the development of disability data and statistics, and in their use.

Finally, good data rely on ongoing, active input from all parties who have an interest in the data. We encourage disability advocates, researchers, and policy makers to use the valuable disability data sources available in Australia, with an awareness of the concepts underpinning these data, and to engage in ongoing discussions and efforts to improve our national disability data resources into the future.

**Author Contributions:** Conceptualization, N.F. and R.H.M.; investigation, N.F., R.H.M. and S.C.; writing—original draft, N.F., R.H.M. and S.C.; writing—review and editing, N.F., R.H.M. and S.C. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Institutional Review Board Statement:** Not applicable.

**Informed Consent Statement:** Not applicable.

**Data Availability Statement:** ABS survey data cited in this paper are available to researchers for analysis, see https://www.abs.gov.au/websitedbs/d3310114.nsf/home/microdata+entry+page (accessed on 5 November 2021).

**Conflicts of Interest:** The authors declare no conflict of interest.
