The aim of this project is 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.
- 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.
- 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
- Describe the process underpinning an Aboriginal and Torres Strait Islander information rights in renal disease strategy
- Develop, pilot and publish an Aboriginal and Torres Strait Islander information rights in renal disease governance framework (AIR-Framework)
- 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
- Process evaluation describing responses to the AIR-Framework (ANZDATA and renal patient group and stakeholder operational responses)
- 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.
- Top-End NT Renal Patient Advisory and Advocacy Committee (RAAC)
- Kidney Health Australia-Caring for Australasians with Renal Impairment Guideline writing
- Australia and New Zealand Dialysis and Transplantation Registry