THE HON WARREN SNOWDON MP
Minister for Indigenous Health, Rural and Regional Health and Regional Services Delivery
19 July 2010
The Australian, Northern Territory, South Australian and Western Australian Governments have agreed to the Terms of Reference for a Central Australian renal study.
The study, funded by the Australian Government, will assess the current issues surrounding the delivery of renal services in Central Australia taking into account stakeholder consultation and activity-based data.
The findings will inform consideration of the most effective and feasible service delivery options and pathways for care for Aboriginal and Torres Strait Islander patients in need of renal services, including dialysis, and will identify issues around the distribution of these services.
While the study will focus on the Central Australian region in the first instance, it is expected that the findings will have application to the wider renal Aboriginal and Torres Strait Islander population residing in remote and very remote areas across the country.
“The joint study will be used to assist communities and service planners determine the most appropriate service delivery models and care pathways to facilitate access to community based renal services”.
“An important part of study is that it will take into consideration the current and projected demand from Aboriginal and Torres Strait Islander peoples residing in rural and very remote communities and the challenges to service delivery in these areas”.
The study will build on the body of work already undertaken by the Australian Government in the development of the National Service Guidelines for the Management of Dialysis and Kidney Transplantation in Remote Australia 2006.
A process has been underway to choose a consultant, and it is expected a consultant will be appointed to conduct the study shortly.
There will be extensive consultation with individuals, their families, communities and service providers affected by the growing demand for dialysis in central Australia.
A copy of the agreed Terms of Reference is attached.
Terms of Reference
Study on service planning for renal dialysis services in remote and very remote areas.
The purpose of this study is to develop a range of feasible clinical service delivery models and care pathways to best meet (current and projected) needs for Aboriginal and Torres Strait Islander patients from remote communities requiring dialysis in Central Australia.
While the study will focus on the Central Australia region in the first instance, it is expected that the findings will have application to the wider Indigenous population with renal disease residing in remote and very remote areas across the country. This will build on the body of work already undertaken by the Australian Government in the development of the National Services Guidelines for the Management of Dialysis and Kidney Transplantation in Remote Australia 2006.
The study will inform communities, policy makers and service providers about future renal needs and workable and sustainable service options that take into account quality requirements, patients and staff safety, technical and economical feasibility and workforce needs.
This study will:
- map the current and future clinical, social and cultural needs of renal patients in remote and very remote locations, with a focus on establishing trends in the need for renal services in remote Australia;
- make projections (with high and low range) of these needs for the next 5-10 years based on the best available data of chronic disease and chronic kidney disease in communities and the incidence and prevalence of end stage renal disease;
- identify service models, their availability and efficacy, including treatment modalities and the known and potential uptake of these treatment modalities over the last 1 – 2 years;
- consult with Aboriginal and Torres Strait Islander peoples in the context of viable service delivery options on various treatment modalities and the associated training and support needs;
- make recommendations on the feasible clinical service delivery solutions with respect to:
- avenues to increase the uptake of self-care and other appropriate modalities
- cost-effectiveness (including but not limited to volume, sustainability, whole of service costs, etc);
- patient safety – including quality and accreditation requirements in each State or Territory jurisdiction;
- social aspects including but not limited to dislocation, provision of housing (for patient and family dislocated from community and also ensuring housing on their return) and community disruption (i.e. elders having to leave community to seek treatment);
- return to country programs – including better ways to deliver these services;
- viability, given the requirements for specific infrastructure, location characteristics and limitations;
- sustainability of service delivery including workforce issues;
- cultural needs of patients; as well as their
- preferred treatment pathways
- patient compliance and mechanisms to improve compliance rates taking account of the multitude of reasons for non-compliance i.e. cultural, service delivery quality etc
- alternative workforce options and consequent training needs
- desired/necessary primary health and tertiary service interface to monitor and effectively manage patients along the chronic disease/chronic kidney disease pathway.
The study will take into account the following:
- change over time in the geographic distribution of the need for renal services and the implications for flexibility in service delivery;
- the impact of advancements in, and increased access to, peritoneal haemodialysis therapies in models that include community based, supported and unsupported, intermittent and mobile;
- mindful of current and future technological advancements – i.e. ICT and remote capabilities to have real time/live feeds into treatment rooms to read results or discuss issues with patients;
- risk and safety issues noting the need to understand these from a patient and community perspective as well as a service provider perspective;
- infrastructure needs such as reliable water and power supply, as well as clinically appropriate facilities for dialysis; and lastly
- how the broader primary health care environments is likely to change as a result of current reform policy.