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. 2021 Dec 31;37(1):159-167.
doi: 10.1093/ndt/gfaa343.

Availability, coverage, and scope of health information systems for kidney care across world countries and regions

Emily J See  1   2 , Aminu K Bello  3 , Adeera Levin  4 , Meaghan Lunney  5 , Mohamed A Osman  3 , Feng Ye  3 , Gloria E Ashuntantang  6 , Ezequiel Bellorin-Font  7 , Mohammed Benghanem Gharbi  8 , Sara Davison  3 , Mohammad Ghnaimat  9 , Paul Harden  10 , Htay Htay  11 , Vivekanand Jha  12   13 , Kamyar Kalantar-Zadeh  14 , Peter G Kerr  15   16 , Scott Klarenbach  3 , Csaba P Kovesdy  17 , Valerie Luyckx  18   19 , Brendon Neuen  20 , Donal O'Donoghue  21   22 , Shahrzad Ossareh  23 , Jeffrey Perl  24   25 , Harun Ur Rashid  26 , Eric Rondeau  27   28 , Saad Syed  3 , Laura Sola  29 , Irma Tchokhonelidze  30 , Vladimir Tesar  31 , Kriang Tungsanga  32   33 , Rumeyza Turan Kazancioglu  34 , Angela Yee-Moon Wang  35 , Chih-Wei Yang  36 , Alexander Zemchenkov  37   38 , Ming-Hui Zhao  39   40   41   42 , Kitty J Jager  43 , Fergus Caskey  44   45   46 , Vlado Perkovic  47 , Kailash K Jindal  2 , Ikechi G Okpechi  48   49 , Marcello Tonelli  50   51 , John Feehally  52 , David C Harris  53 , David W Johnson  54   55   56
Affiliations
Free article

Availability, coverage, and scope of health information systems for kidney care across world countries and regions

Emily J See et al. Nephrol Dial Transplant. .
Free article

Abstract

Background: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas.

Methods: As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT).

Results: Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups.

Conclusions: These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.

Keywords: chronic kidney disease; end-stage kidney disease; health information systems; kidney replacement therapy; registries.

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