Aims:
To develop an Aboriginal and Torres Strait Islander led culturally appropriate consultation process informing the needs of the inaugural KHA-CARI (Kidney Health Australia-Caring for Australasians with Renal Impairment) Guideline for the management of chronic kidney disease (CKD) in Aboriginal and Torres Strait Islander peoples.
Aboriginal and Torres Strait Islander leadership within the project team have expertise in health (clinical, research and policy) and community engagement and development. They will lead and guide the practical application, implementation, monitoring and evaluation of culturally appropriate strategies and methods.
Nationally endorsed clinical practice guidelines and data sovereignty processes are required to underpin best clinical practice, which will benefit Aboriginal and Torres Strait Islander peoples today and in the future.
Benefits:
- The nationally relevant guideline, which is structured around the communities values, will be relevant and useful to advance kidney health following a transparent community consultation.
- An Aboriginal and Torres Strait Islander data governance framework foundationally informs data use, interpretation and effective policy development.
Measures:
- Base the published guideline for management of CKD on effective and respectful community consultation
- Publish the guideline consultation process, recording the engagement process and participant attribution (either as acknowledgement or authorship)
- Design and publish the ANZDATA Aboriginal and Torres Strait Islander data governance framework, recording the contribution of the community to its development
- Record (by process evaluation) the steps undertaken by ANZDATA to operationalise the AIR Framework
- Identify (publish) the gaps in health service delivery around data collection, data use and health policy that will support the AIR Framework.
Methodology and expected outcomes:
- To describe the process underpinning an Aboriginal and Torres Strait Islander information rights in renal disease strategy
- To develop, pilot and publish an Aboriginal and Torres Strait Islander information rights in renal disease governance framework (AIR-Framework)
- To describe and publish the results of an Aboriginal and Torres Strait Islander patient and health care consultation process which will inform the KHA-CARI Guidelines writing process
- To process evaluation describing responses to the AIR-Framework (ANZDATA and renal patient group and stakeholder operational responses)
- To undertake strategies to increase the publication of peer-reviewed Aboriginal and Torres Strait Islander renal health manuscripts which can inform the evidence base for the KHA-CARI Guideline.
Capacity development activities
Aboriginal and Torres Strait Islander renal health care workers and specific renal community groups will be engaged in the outset of the project and will be nurtured and mentored through train-the-trainer process to ensure knowledge translation, knowledge transfer and reciprocity of information of renal disease. This will be done using community development principle of valuing the local.
Chief investigator:
Project dates:
December 2017 to May 2019.
Funders:
Collaborators:
- Top End Renal Patient Advisory and Advocacy Committee (RAAC)
- Kidney Health Australia
- ANZDATA
- KHA-CARI Guidelines
- Darwin Consultation Meeting held 23-24 April 2018
- Recording kidney failure treatments in Australia and New Zealand
- ANZDATA infographic (2017): Treatment of kidney failure for Aboriginal and Torres Strait Islander peoples of Australia
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Catching Some Air | Final Report
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Targeted Policy Brief | Catching Some Air
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Combined Summary Report | Catching Some Air
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Summary Report | Catching Some Air 2018
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Summary Report | Catching Some AIR Alice Springs, 6-7 September 2018
- 1.54 MB
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RACP e-bulletin | Creating a sustainable health care model for assisted dialysis in very remote Australia
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Summary Report | Catching Some AIR Thursday Island, 5-8 June 2018
- 938 kB
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Summary Report | Catching Some AIR Darwin, 23 & 24 April 2018
- 876 kB
Follow us on Twitter #CatchingSomeAIR
2019 events
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Symposium 17 June 2019 - Hosted in Darwin with links to Thursday Island and Alice Springs
2018 events
- Darwin Consultation Meeting 23-24 April 2018
- Thursday Island Consultation Meeting June 2018
- Alice Springs Consultation Meeting, September 2018
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$440 million funding boost for vital health and medical research for all stages of life
$6 million in research funding for three Indigenous health grants in the Northern Territory. This includes $2.5 million for an NHMRC Centre of Research Excellence at the Menzies School of Health Research to prevent and manage bronchiectasis, a lung disease which results in recurrent chest infections and is particularly common in Aboriginal and Torres Strait Islander people.
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Senator reveals personal story of kidney disease
Nephrologist at the Menzies School of Health Research, Paul Lawton, said his research team had been investigating key causes that dramatically impact upon remote Aboriginal communities.
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Croakey | Summer May Finlay with Dr Jaqui Hughes
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SMH | Hope and healing
A new approach to treatment is helping Indigenous Australians fight kidney disease
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Video CSA from Alice Springs Consultation Meeting September 2018
Video CSA from Alice Springs Consultation Meeting September 2018
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CSA - Catching Some Air
Video CSA from Thursday Island Consultation Meeting June 2018
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National review to investigate low Indigenous kidney transplant rates
One of the members of the panel will be Dr Jaqui Hughes, Australia’s only Aboriginal and Torres Strait Islander nephrologist, based at the Royal Darwin Hospital and at the Menzies School of Health Research, who said the news of the inquiry was “really welcome”.
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Feds unveil review of kidney process | NT News
The Federal Government is poised to announce an inquiry into indigenous access to kidney transplants.
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Indigenous Patient Voices May 2018 newsletter
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NT News | Meetings for Health School
Menzies School of Health Research is hosting the first consultation to establish patient and community led national guidelines to be added to the overall management plans for people affected by kidney health issues.
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Creating better guidelines for kidney health management
Menzies School of Health Research (Menzies) is hosting the first consultation to establish patient and community led national guidelines to be added to the overall management plans for people affected by kidney health issues.
Catching Some Air (CSA) - Community Feedback Video Final Master