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Catching some AIR

Catching Some AIR project (Asserting Aboriginal and Torres Strait Islander Information Rights in Renal Disease)

The Catching Some AIR project consultation meetings focused on gathering recommendations to inform the development of kidney health guidelines for best practice clinical care and data use which advances health for Aboriginal and Torres Strait Islander people. The project was authorised and endorsed by ANZDATA and KHA-CARI Guidelines to seek community-informed recommendations for these guidelines for best practice from Darwin, Thursday Island and Alice Springs. Catching Some AIR was funded by the Lowitja Institute for Aboriginal and Torres Strait Islander Health CRC, under the priority research theme of First Nations Data Sovereignty. The project commenced in December 2017, and concluded in May 2019.

Aims

To collate recommendations from Aboriginal and Torres Strait Islander patients and carers living in Darwin, Thursday Island and Alice Springs which would inform the evidence base for creation of:

  1. The inaugural KHA-CARI Guideline for the Management of Chronic Kidney Disease in Aboriginal and Torres Strait Islander peoples and Mãori.
  2. An Inaugural Indigenous Data Governance Framework within a binational kidney disease clinical quality registry (ANZDATA).

Outcomes

Catching Some AIR is proud to report five strategic outcomes:

  1. Recommendations for Guidelines Best Practice Renal Clinical Care Best Practice Renal Health Data
  2. A partnership with Top End Renal Advisory and Advocacy Committee (RAAC)
  3. A Targeted Policy Brief
  4. Community Voices Directly Influencing National Policy
  5. Renal Health Workforce

Impact

The impact of the research is articulated in the future needs and agreement to those future goals, articulated in “we will” statements. We will:

  1. Support Aboriginal and Torres Strait Islander people’s human rights to live with optimal renal health
  2. Advocate for the creation of coordinated and economically sustainable strategies across all levels of government to achieve Aboriginal and Torres Strait Islander renal health
  3. Advocate for the development and support of Renal Disease Prevention Centres in rural and remote Aboriginal and Torres Strait Islander communities
  4. Advocate for and support Aboriginal and Torres Strait Islander cultural leadership in renal health prevention, diagnosis, treatment and clinical management and data management and custodianship
  5. Use Renal health data to support and promote Aboriginal and Torres Strait Islander renal health, by monitoring renal health, reporting renal health advancement, and informing Aboriginal and Torres Strait Islander people of activities and outcomes directed toward closing the gap in renal disease
  6. Advocate for and support the allocation of existing funding and policy efforts to improve Aboriginal and Torres Strait Islander renal health.
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Activities:

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.

Next Steps:

  1. Dr Hughes and Ms Duff will lead the design and implementation plan of the ANZDATA Indigenous Data Governance Framework.
  2. 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.
  3. 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.
  4. 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.
  5. We will plan for a workforce summit in 2020 of the Northern Australia Aboriginal and Torres Strait Islander Renal Health Workforce taskforce.

Impact Post-Symposium:

The timely reporting and our dissemination strategy has already been impactful:

  1. Prof Bart Currie, has used our Catching Some AIR Final Report, in addition to other reporting to inform Hot North program and RHDAustralia
  2. Martin Howell from KHA-CARI presented the Catching Some AIR Final Report in the Westmead Hospital #CKRJournalClub
  3. 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
  4. 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
  5. 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.
  6. 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
  7. 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)
  8. 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.
  9. 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
  10. The Thursday Island live site delegates wrote a letter in support of the C-AIR Symposium and action proposed.
  11. 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
  12. 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.
  13. 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/
 
Related Resources:
Project leader

Jaquelyne Hughes

Administering institution:

Menzies School of Health Research