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Catching some AIR

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

 

Project Aims

To address the sustained gaps in the bicultural knowledge, capacity, and understanding of the recommended structural practices and information expectations of Indigenous Australians and their clinicians.  

 

Objectives:

  1. Develop an Indigenous-led culturally appropriate kidney disease management guideline (Kidney Health Australia – Caring for Australasians with Renal Impairment (KHA-CARI) Guideline). 
  2. Develop a process for Indigenous data governance within a binational kidney disease clinical quality registry (Australia and New Zealand Dialysis and Transplant Registry ( ANZDATA)).
  3. Identify and develop the processes necessary to enable effective partnerships to advance Indigenous kidney health.

 

Project Team:

Project leader: Dr Jaquelyne Hughes, Royal Darwin Hospital nephrologist, Post-Doctoral Research Fellow, Menzies School of Health Research 
Project partners: James Cook University, ANZDATA 
Administering organisation: Menzies School of Health Research 
Start Date: 1 December 2017—30 June 2019 

 

Methodology

This study had five components involving a strategic partnering of communities and patients with major Renal health systems. They are: 

  1. Describe the process underpinning Indigenous information rights in renal disease strategy: ‘who says so, why, why now?’. Document the evolution of this governance process. 
  2. Develop, pilot, and publish an Indigenous information rights in renal disease governance framework (AIR – framework).
  3. Describe (publish) the results of an Indigenous patient and health care consultation process which will inform the CARI Guideline writing process. 
  4. Process evaluation describing responses to the AIR-framework. This component includes:
    • working with ANZDATA and renal patients in Darwin (Renal Patient Advisory and Advocacy Committee) to develop and evaluate their operational responses over 12 months 
    • demonstrating the AIR-framework in Individual communities (single visits, dove-tailed to CARI stakeholder consultation strategy). 
  5. Undertake strategies to increase the publications of peer reviewed Indigenous renal health manuscripts which can inform the evidence base for the KHA-CARI Guideline. 

 

Project Findings

This study proved that Aboriginal and Torres Strait Islander health care users desire access to data and have purposes for community development with kidney related data. 

The research also revealed that Aboriginal and Torres Strait Islander peoples need a coordinated and economically sustainable strategy across all levels of government to achieve better renal health. 

It also found there is need for the development and support of a renal disease prevention centre in rural and remote Aboriginal and Torres Strait Islander communities. 

 

Project Outcomes

Knowledge
  • Stakeholders and staff improved understanding of what patient-centred care is and how to mobilise around patient-centred care. 
Awareness
  • The processes within ANZDATA, the binational registry for kidney failure treatments, now have direction for community informed best data practices.
Behaviour
  • Forums and symposium allowed staff and stakeholders to mobilise around patient-centred care.
  • Stakeholders desired ongoing connection to the project in order to better meet patient-centred care needs in ways that patients prefer. 
Skills
  • Increased authorship opportunities to community leaders involved in the project. 
  • Bi-directional mentoring between research team and community members. 
 
Related Resources:
Project leader

Jaquelyne Hughes

Administering institution:

Menzies School of Health Research