Data Collection
The NIKTT commissioned the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) to deliver a 24-month pilot project involving tertiary renal health services, enabling the collection and analysis of additional pre-transplant data points. This was an important first step in establishing a consistent framework for collecting and reporting data on access to transplantation, which aims to significantly improve our understanding of the inequities that affect Aboriginal and Torres Strait Islander patients throughout the pre-transplant journey.
All renal health services in Australia were invited to participate in the voluntary trial of an enhanced and expanded ANZDATA data collection protocol, which required units to capture a number of additional pre-transplant data points. The 20 units who treat 90% of prevalent Aboriginal and Torres Strait Islander dialysis patients were financially incentivised to participate, and received pro-rata payments based on prevalent dialysis patient numbers. Participating units captured and reported data on all Aboriginal and Torres Strait Islander and non-Indigenous patients receiving RRT who are covered under existing ANZDATA consent arrangements.
In total, 26 units across Australia participated in this enhanced data collection over the 2019 and 2020 data collection periods, as shown below.
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The NIKTT Data Pilot project comprised of two survey collections (Transplant Assessment Stage Survey and Transplant Assessment Pathway Survey).
The Transplant Assessment Stage survey was collected cross-sectionally at end of year and was collected as an extension of the normal ANZDATA Annual Survey. Sites were required to report on the assessment status of prevalent dialysis patients, including whether a patient is yet to be assessed for transplantation, are in workup for transplantation, are on the waiting list, or are ineligible for transplantation, and outline the reasons why.
The Transplant Assessment Pathway survey involved the ‘real time’ reporting of incident dialysis patients throughout the survey period. Sites were required to report on a patient’s progress towards achieving kidney transplant waitlisting, including their history of undertaking eligibility assessment, workup, and transplant assessment. It also required sites to report on where the patient lived prior to starting renal replacement therapy.
Additionally, ANZDATA has incorporated a specific chapter into the ANZDATA annual report on kidney transplantation among Aboriginal and Torres Strait Islander people.