During 2018-2019, ANZDATA partnered with the Catching Some Air- Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease Project to define best data practices for Aboriginal and Torres Strait Islander patient data held within ANZDATA.
The Catching Some AIR- Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease Project was conceptualised by leaders of the ANZDATA Indigenous Health Working group during 2016-2017, and the project was delivered by Menzies School of Health Research and funded by the Lowitja Institute during 2018-2019.
Members
- Samantha Bateman (Convenor)
- Breanna Solomon (Co convenor)
- Elisa Bongetti
- Mark Tiong
- Scott Jones
- Paul Lawton
- Tahnee Grigson
- Kelli Owen (Consumer Engagement Representative)
- Eric Au (Epi Fellow)
Past Members
~ Matthew Jose (Acting Convenor 2021 – 2022)
~Jaqui Hughes
(Convenor 2015 – 2020 & Member since 2009)
~ Donisha Duff
(Deputy Convenor 2015 – 2020
Acknowledgements
Thanks to ANZDATA team who assisted with data analysis and interpretation for this infographic- Dr Chris Davies, Dr Mark Tiong, Ms Donisha Duff, Associate Professor Jaqui Hughes, Dr Namrata Khanal, Dr Phil Clayton, Ms Kylie Hurst, Prof Stephen McDonald. ANZDATA thanks the Lowitja Institute who funded the artist, Ms Norma Benger, as part of the Catching Some Air- Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease Project, to create and/ or adapt some of the icons in the infographic.
Latest News
- updated infographic which describes key information about patients in 2020, who received dialysis treatment or who were living with a kidney transplant.
- ANZDATA also developed and produced two complementary videos describing the ANZDATA organization, and which talks through the information described in the infographic
- Supported Government agency describing information about kidney disease in Aboriginal and Torres Strait Islander Peoples (AIHW, Australian Health InfoNet)
- Collaborated with Prof Garvey in NHMRC EOI for National Network of Aboriginal and Torres Strait Islander Health Researchers
- Manuscript developed on Data Sovereignty and Governance developed and awaiting publication
Meetings
February 2023
June 2023
Projects
ANZDATA Indigenous Data Sovereignty has been a key project of the ANZDATA Aboriginal and Torres Strait Islander Health Working group during 2015-2019
Access to Kidney Transplantation assessment in Aboriginal and Torres Strait Islander Peoples
Top End Language Interpretation by Northern Territory Aboriginal Interpreter Service of “ANZDATA Infographic of key information about Aboriginal and Torres Strait Islander Peoples during 2018”
Data Governance
ANZDATA is a data custodian for a tremendous amount of data for people in Australia and New Zealand. The major 2020 activity of the ANZDATA Aboriginal and Torres Strait Islander Health Working Group related to operationalising processes for Indigenous Data Governance and Sovereignty of data.
Achievements
Multimedia publications from the working group
NHMRC Research Excellence Awards
Jaqui Hughes received an award for eGFR3 Study, which was the top ranked application in 2019 Inaugural Clinical Trial and Cohort Scheme.
As an invited speaker and in talking about preventing progressive kidney damage, Jaqui referenced ANZDATA, which collates and reports on ESKD numbers.
Photo credit: Irene Dowdy, ID Photo (NHMRC Official Photographer)
Photo Info (1): ANZDATA Steering Committee representatives, Prof Matthew Jose and Associate Professor Shilpa Jesudason, participated in the Catching Some AIR Talking Report Symposium (June 17th 2019, Darwin), also present Prof Karen Dwyer, Deakin University and Dr Jaqui Hughes, Catching Some Air Project Leader and convener ANZDATA Aboriginal and Torres Strait Islander Health Working group.
Photo credit: Eleanor Gerrard
Photo Info (2): Professor Matthew Jose, representing ANZDATA Steering Committee participated in a panel with Ms Donisha Duff (Institute for Urban Indigenous Health and ANZDATA Aboriginal and Torres Strait Islander Health Working group), and Thursday Island community delegates, Mr Willie Wigness and Mr Robert Sagigi.
Photo credit: Jaqui Hughes
