Potentially preventable hospitalisations of people with intellectual disability in New South Wales

In reply: We thank van der Wel and colleagues1 for their letter. We agree that detailed cohort descriptions are important for interpretation of research findings. Although the characteristics of our cohort with intellectual disability are published,2 details are not publicly available for the New South Wales population. However, all comparisons in our study were corrected for age and sex differences.

Lack of data linkage infrastructure that allows interrogation of health outcomes for specific groups, including those with disability, is an unfortunate feature of the Australian data landscape. We have previously argued the necessity of a national outcomes data system for people with intellectual disability, which will be incorporated in a larger National Disability Data Asset3 should this be supported in upcoming deliberations by the Australian Government. Meanwhile, we plan further research using data from our newly formed linked dataset, which contains a larger cohort of people with intellectual disability (n > 100 000 people) and a sociodemographically matched control cohort (n > 450 000 people), which will allow us to present and adjust for a comprehensive array of population characteristics.

In Australia, the National Healthcare Agreement: PI 18 defines potentially preventable hospitalisations by a predetermined list of conditions (through International Statistical Classification of Diseases codes) and specifies how a condition is to be recorded in an admitted patient medical record. Potentially preventable hospitalisations are routinely presented based on this definition without critique of the clinical context or the circumstances surrounding the admission. This approach does not invalidate our or others’ results, but presents limitations in our understanding of context and response. As outlined in our article, our next steps will be to identify the drivers of preventable hospital admissions and which of these admissions are truly preventable.

We acknowledge the limitations of our study, yet we view it as an important first step in identifying rates of potentially preventable hospitalisations for people with intellectual disability in Australia. Without access to these data, population level health inequities for people with intellectual disability will remain obscure and unaddressed. Their exposure informs work by the Disability Royal Commission, which has recently found that people with cognitive disability in Australia face “systemic neglect” by the Australian health system.4