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We met with Aboriginal and Torres Strait Islander people living with chronic kidney disease, either as health care users or carers or family support persons in Darwin, Thursday Island and Alice Springs. We prepared for the meetings with a meeting program, and a specialist C-AIR community engagement leader engaged with delegates at each site. We documented the consultations and recommendations in individual site and video reports. These were approved by the community before public dissemination. We hosted a Catching Some AIR Talking Report Symposium at the end of the project to describe the aims, activities, and outcomes of the project. The Talking Report Symposium was an opportunity to involve participants’ at all three sites, and with external stakeholders who were involved in the Catching Some AIR project.
- Dr Hughes and Ms Duff will lead the design and implementation plan of the ANZDATA Indigenous Data Governance Framework.
- The clinical care recommendations will be published in a peer-review publication format, which complements the Catching Some AIR site reports and videos. These will represent a strong recommendation from Darwin, Alice Springs and Thursday Island for best practice Renal Care Guidelines, which will be written following the consultations which are led by Kidney Health Australia in the other Australian regions.
- We await the Federal Government response to the submitted National Strategic Action Plan for Kidney Disease (expected September 2019)– where community voices were directly represented in the submission.
- We will submit the Catching Some AIR Final report to the Close the Gap Campaign, so that renal health will be included in activities to support health equity for Aboriginal and Torres Strait Islander Peoples.
- We will plan for a workforce summit in 2020 of the Northern Australia Aboriginal and Torres Strait Islander Renal Health Workforce taskforce.
The timely reporting and our dissemination strategy has already been impactful:
- Prof Bart Currie, has used our Catching Some AIR Final Report, in addition to other reporting to inform Hot North program and RHDAustralia
- Martin Howell from KHA-CARI presented the Catching Some AIR Final Report in the Westmead Hospital #CKRJournalClub
- Prof Matthew Jose, ANZDATA Steering Committee chairperson, has used the feedback from the First Nations Data Governance Framework to guide data registry discussions with Aboriginal collaborators in Tasmania
- Hon Greg Hunt MP has written to me, informing the status of the Renal Health RoadMap, and that my work, including C-AIR is recognised for its importance, and he looks forward to continue working with me
- KHA, Dr Lisa Murphy, has provided an update on the National Strategic Action Plan for Kidney Disease, advised the plan will be available for public sharing in September 2019.
- The TSANZ performance report, ‘improving Aboriginal and Torres Strait Islander access to and outcomes of kidney transplantation’ cited PATIENT engagement methods of C-AIR. This performance report was endorsed by Commonwealth Dept Health
- Eleanor Gerard, Improving Access to Transplantation met with Members of the Purple House Preceptors in Darwin, after the C-AIR meeting, to discuss the opportunity to present preceptor model in South Australia (Heather Hall, David Croker and Lachlan Ross are leaders of RAAC who are investigators on C-AIR and work for Purple House)
- Thursday Island Diabetes and Kidney Health Community Committee had opportunity to discuss assisted dialysis with dialysis service provider (Purple House) within their own land on Thursday Island, so that more Islanders can come home from Cairns.
- As a result of attendance at the C-AIR Talking Report Symposium, there are shared collaboration goals for data and health for QLD Health Dept of Data, Mr Daniel Williamson and Thursday Island Diabetes and Kidney Health Community Committee members, Mr Willie Wigness and Mr Robert Sagigi
- The Thursday Island live site delegates wrote a letter in support of the C-AIR Symposium and action proposed.
- There was agreement that health staff should learn how to deliver the ANZDATA Aboriginal and Torres Strait Islander chapter infographic, and that they should be made into Indigenous languages for improved knowledge exchange
- The MJA Workforce Paper was published. Dr Hughes has been contacted by clinicians across Australia in support of the paper; Apunipina Health Council requested a Workforce taskforce representative to attend their summit in September 2019; Dr Christine Jeffries-Stokes, Paediatrician Kalgoorlie Hospital and Leader, Western Desert Kidney Health Project congratulated us on the value of the Workforce paper.
- ANZDATA website includes information with regards to the talking report: https://www.anzdata.org.au/anzdata/about/working-groups/aboriginal-and-torres-strait-islander-health-working-group/
Catching some AIR project VIDEO
- L. Mick-Ramsamy, J. Kelly, D. Duff, A. Cass, L. Ross, D. Croker, H. Hall, P. Mills & J.T. Hughes 2019, Catching Some AIR – Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease Project- The Final Report, (online), Menzies School of Health Research
L. Mick-Ramsamy, L. Ross, J. Kelly, J. T. Hughes 2018, Summary Report, Alice Springs, Catching Some AIR- Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease (online), Menzies School of Health Research
J. T. Hughes, J. Kelly, L. Mick-Ramsamy, P. Mills P 2018, Summary Report, Thursday Island, Catching Some AIR- Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease (online), Menzies School of Health Research
L. Mick-Ramsamy, D. Duff, A. Cass, J. T. Hughes 2019, A targeted policy brief to Close the Gap in Aboriginal and Torres Strait Islander diabetes and kidney health, Menzies School of Health Research
J. T. Hughes, G. Lowah & J. Kelly 2019, Re‐framing the Indigenous kidney health workforce, Medical Journal of Australia, vol. 211(1): 6–6.e1, doi: 10.5694/mja2.50210