The WA NeuroHub initiative aims to co-design an online health and research platform with key stakeholders.
An innovative new project from Edith Cowan University (ECU), the Perron Institute and Anthologie will aim to improve the health and research landscape for Western Australia's neurological community.
There are more than 600 different neurological disorders, which when combined are in the top five Burden of Disease groups for both fatal and non-fatal disease groups in WA.
The vast number of different conditions have contributed to many challenges and gaps in providing care and services for people with neurological disorders, however many of these conditions share common symptoms, care needs and treatments.
The WA NeuroHub initiative aims to co-design an online health and research platform with key stakeholders, such as people with lived experience of neurological conditions, health professionals, not-for-profit organisations, researchers and industry.
It aims to resolve many systemic issues which negatively impact the health and wellbeing of people living with a neurological condition, as well as the broader neurological community.
Early conversations have included the potential of data linkage and using artificial intelligence to generate National Disability Insurance Scheme reports.
The aim is for an up-to-date service directory which changes in real time will enable patients to find clinicians with reduced waiting periods faster, while a constantly updated research registry is intended to display current projects and studies taking place in WA and offer the opportunity to share information.
A long time coming
ECU Centre for Precision Health Research Fellow Dr Travis Cruickshank said a project such as Neurohub was long overdue.
"I've been having conversations with the community over a 10-year period, starting when I was a PhD student — so it's a thrill to see this come to fruition," he said.
"We want this to be the central point where people go to get their health data and find service providers and not-for-profit organisations that will help them with their or their family member's condition.
"It is about helping people living with a neurological condition, through digitally enriching the health and research landscape in WA."
Multiple Sclerosis WA (MSWA) and MS Australia have contributed funding to the project, while collaborators include not-for-profit partners Synapse, Stroke Foundation, Huntington's WA, Parkinson's WA, Neurological Council of WA, community support groups The Kings Park Warriors, FND Hope, MS & All Neurological Conditions Perth, and health partners State Head Injury Unit and Neurosciences Unit.
Centre for Precision Health Director Professor Simon Laws said chronic conditions affecting the central nervous system included MS, Parkinson's disease, Alzheimer's and Huntington's Disease.
"These conditions can alter or compromise many functions, including movement, sight, and memory and no two people’s experiences are the same," he said.
Seeking community input
The research team will hold NeuroHub Workshops on September 2 and September 9 with members of the neurological community at ECU's Mount Lawley campus.
People living with a neurological condition, family members and caregivers are invited to attend and can register their interest by emailing t.cruickshank@ecu.edu.au.
Workshops with health professionals, researchers, industry and not-for-profit organisations are planned for later in the year.
"With intel from the workshops series, we aim to have a prototype of an online health and research platform to present to philanthropists and investors in the next 6 months," Dr Cruickshank said.
