Date published: 
12 January 2019
Media type: 
Media release
General public

The Liberal National Government is providing more than $1.5 million for a new pilot program that will help patients of serious and rare diseases connect with the best health services and treatment.

The funding over three years will be provided to the International Centre for Community-Driven Research to deliver the Patient Pathways Program.

This program will help those diagnosed with certain, often rare diseases better navigate the health system and will also inform future research and expanded support for patients.

Often when diagnosed with a serious medical condition, understanding what your next steps will be can be daunting, this can be particularly daunting when the condition is rare and there are less treatment options.

The program will help patients and their families access the most suitable health services for their condition and provide extra support for patients and their carers.

The funding will provide ten patient organisations with extra resources including tele nurses, so that people who contact them for advice can be informed about the best patient pathway for their circumstances.

This support will connect patients with specialist care, homecare services or mental health support and open up opportunities to participate in and clinical trials.

This is particularly beneficial for patients where there is a lack of treatment option for their condition.

The aim is to ensure people who are in need of support get fast, expert advice tailored to their particular circumstances in a co-ordinated way.

Patient organisations will be identified through a grant round and the result of the pilot will inform future work or expanded roll out.

The program was developed by the Centre for Community-Driven Research (CCDR), and the Australian Patient Organisation Standing Committee, a group of eight organisations including MS Australia, the Unicorn Foundation, Rare Voices Australia, SMA Australia, hearts4heart, Muscular Dystrophy WA, Lymphoma Australia and Save Our Sons Duchenne Foundation.

The program will be led by CCDR’s Chief Executive Dr. Catherine Holliday.

The Patient Pathways program will commence in 2019 with the inaugural Patient Organisation Annual Conference scheduled for May 2019.

Funding for the Patient Pathways Program is provided through the Primary Health Care Development Program which supports activities that improve access to quality primary health and medical services.

Our Government is committed to ensuring that our record level of investment in healthcare means Australians can access the services and care they need in a targeted and timely fashion.