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:

The project commenced in December 2017 and will conclude in May 2019.

Funders:

Collaborators:
  • Top End Renal Patient Advisory and Advocacy Committee (RAAC)
  • ​Kidney Health Australia
  • ANZDATA
  • KHA-CARI Guidelines 
Follow us on Twitter #CatchingSomeAIR
2019 events
  • 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
  1. $440 million funding boost for vital health and medical research for all stages of life

    $440 million funding boost for vital health and medical research for all stages of life

    Date

    $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.

  2. Senator reveals personal story of kidney disease

    Senator reveals personal story of kidney disease

    Date

    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.

  3. Croakey | Summer May Finlay with Dr Jaqui Hughes

    Croakey | Summer May Finlay with Dr Jaqui Hughes

    Date

  4. SMH | Hope and healing

    SMH | Hope and healing

    Date

    A new approach to treatment is helping Indigenous Australians fight kidney disease

  5. Video CSA  from Alice Springs Consultation Meeting September 2018

    Video CSA from Alice Springs Consultation Meeting September 2018

    Date

    Video CSA from Alice Springs Consultation Meeting September 2018

  6. CSA - Catching Some Air

    CSA - Catching Some Air

    Date

    Video CSA from Thursday Island Consultation Meeting June 2018

  7. National review to investigate low Indigenous kidney transplant rates

    National review to investigate low Indigenous kidney transplant rates

    Date

    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”.

  8. Feds unveil review of kidney process | NT News

    Feds unveil review of kidney process | NT News

    Date

    The Federal Government is poised to announce an inquiry into indigenous access to kidney transplants.

  9. Indigenous Patient Voices May 2018 newsletter

    Indigenous Patient Voices May 2018 newsletter

    Date

  10. NT News | Meetings for Health School

    NT News | Meetings for Health School

    Date

    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.

  11. Creating better guidelines for kidney health management

    Creating better guidelines for kidney health management

    Date

    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.

  1. Volume 1 | Issue 1

    Volume 1 | Issue 1

    Date

Catching Some Air (CSA) - Community Feedback Video Final Master