Transition from rehabilitation hospital to the National Disability Insurance Scheme (NDIS) for people with brain injury and spinal cord injury: a data linkage protocol

BMJ Open, 2024 · DOI: 10.1136/bmjopen-2023-082802 · Published: July 2, 2024

Spinal Cord Injury Healthcare Brain Injury

Simple Explanation

This study aims to link data from rehabilitation hospitals with data from the National Disability Insurance Scheme (NDIS) in Australia. The goal is to understand how people with traumatic brain injury (TBI) and spinal cord injury (SCI) transition from hospital rehabilitation to the NDIS. The linked data will help researchers compare a patient's functional independence, measured in the rehabilitation hospital, with the amount of resources they receive from the NDIS. This will help determine if there is a correlation between functional ability and resource allocation. The study uses a secure process to link the data while protecting patient privacy. This involves using a statistical linkage key (SLK-581) and other data items to improve the accuracy of the linkage.

Study Duration

2008-2019 (AROC data); 2013-2022 (NDIS data)

Participants

AROC: 20,886 episodes of care; NDIS: 21,828 individuals

Evidence Level

Not specified

Key Findings

1
The study outlines a protocol for linking data between the Australasian Rehabilitation Outcomes Centre (AROC) and the National Disability Insurance Scheme (NDIS) to track the transition of individuals with TBI and SCI.
2
A stepwise deterministic approach is used for data linkage, employing a statistical linkage key (SLK-581) and other data items to enhance linkage quality.
3
The linkage process involves multiple passes with decreasing levels of information from the SLK-581, validated by disability type, key dates, and geographical location to ensure accuracy.

Research Summary

This protocol describes a study that links data from rehabilitation hospitals (AROC) and the National Disability Insurance Scheme (NDIS) in Australia. The goal is to understand the transition of individuals with traumatic brain injury (TBI) and spinal cord injury (SCI) from rehabilitation to the NDIS. The study uses a stepwise deterministic approach to data linkage, employing a statistical linkage key (SLK-581) and other data items to improve linkage quality. The linkage process involves multiple passes with decreasing levels of information from the SLK-581. The linked dataset will be analyzed to quantify the relationship between functional independence (FIM score) and the funded supports allocated by the NDIS, identify factors predicting support levels, and estimate the prevalence and incidence of TBI and SCI entering the NDIS each year.

Practical Implications

Improved NDIS Planning

Linked data, including FIM scores, could be used as an input to the NDIS planning process, smoothing the administration of transition for participants with severe injuries.

Policy Development

Research findings will inform clinical and policy audiences through peer-reviewed publications and presentations, assisting in the successful roll-out of the NDIS.

Resource Allocation

Understanding the relationship between functional impairment and disability support needs can help ensure appropriate resource allocation within the NDIS.

Study Limitations

1
Reliance on SLK-581 for datasets not previously linked may not correctly identify as many links as fully identifiable data or probabilistic linkage techniques.
2
Potential for bias due to errors in linkage, particularly with the secure, separated linkage approach, requires careful investigation of the linked analysis dataset.
3
The study may miss some true matches due to incorrectly coded disability types in the datasets.

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