Australia and New Zealand Dialysis and Transplant Registry

AIM Sustained health inequities are experienced by indigenous and minority populations. Accurate ethnicity data are fundamental to healthcare planning and provision and monitoring of health outcomes to address such inequities. This study investigated the accuracy of ethnicity data in a large clinical registry of end-stage kidney disease patients (the Australia and New Zealand Dialysis and Transplant Registry; ANZDATA) and hospital-based patient clinical records compared with self-reported ethnicity data collected in the 'Dialysis Outcomes in those aged ≥65 years' (DOS65+) study. METHODS Self-reported ethnicity data were collected, as per national guidelines, from DOS65+ participants and compared with ethnicity data recorded for these participants in ANZDATA and hospital-based patient clinical records. Ethnicities were first prioritised and then grouped into one of the following: European, Māori, Pacific, Asian and Other. Cohen's Kappa statistics were calculated to determine overall non-random agreement. Concordances for ethnic group categories were calculated. RESULTS There was high concordance between self-reported ethnicity and ethnicity recorded in both the ANZDATA (κ=0.95) and hospital-based patient clinical records (κ=0.93). Concordances for ethnic group categories between datasets ranged from 86% to 100%. CONCLUSION Our findings show a high level of agreement for ethnicity recorded for end-stage kidney disease patients between the three datasets, suggesting robust data to support health planning and research. Despite this, alignment of ethnicity data collection methods, as per national guidelines, should occur for all databases used for research and clinical practice in New Zealand.