500 signatures reached
To: Federal Government
SpinalCARE: Database for Spinal Cord Injury in Australia
Spinal units from Australia rely on the outdated (2008) Australian Spinal Cord Injury Registry (ASCIR) data for basic information about injured patients. Since 2008, updated data about injuries has been difficult to obtain, and, while the 2008 Registry provided excellent information about how the injuries happened it is inadequate for research and clinical quality purposes because it did not collect the right data. More detailed and relevant information about patients has been collected using various formats (paper and digital). It resides in spinal units, hospitals and institutes across Australia and is neither compatible nor comparable.
There is no uniform, national spinal cord injury database.
This has led to inconsistent information being recorded in different ways, in different places about different patients. In most instances, the record of information has stopped once a patient has left the care of the facility. This has created a ‘fragmented’ research base throughout the industry as there are no uniform statistics or information such as; the actual numbers of injured patients in the community, the hospital care they received or the medical complications they experienced, what treatments work best and when, different treatment protocols across units and their results, expected quality vs. actual quality of life and so on.
There is an urgent and overdue requirement for a coordinated national approach to develop a secure and shared platform containing the collection of current and ‘whole-life’ spinal cord injury data across Australia, that follows patients’ through the course of their injury and life beyond hospitalization.
A team from the Institute for Breathing and Sleep (one of our member organisations) in Melbourne have created a live prototype called ‘SpinalCARE’ which is currently accruing data on all new cases of spinal cord injury in Victoria and New South Wales.
The Australian Spinal Cord Injury Network wish to partner with the Federal Government and seek funding of approximately $5 million over five years to develop and implement SpinalCARE.
Sign our petition and show your support!
Help us campaign the Federal Government to make the database a reality.
Why is this important?
The development of an updated platform could:
- Lead to better health outcomes, higher quality of life and longer life.
- Enable better employment and education outcomes.
- Reduce the costs to the economy and budgets by providing insight to help facilitate effective quality improvement activities.
- Assist with collaborative research translation (research leading to changed clinical practices).
- Improve the quality of service planning, service delivery, care, and outcomes for people with spinal cord injury.
- Support clinical trials already in place by providing ongoing data and therefore cut the costs of research.
- Provide data for future clinical trials and therefore reduce the future funding costs.
With your help, our aim is to extend this data platform to all of Australia.
The Australian Spinal Cord Injury Network is campaigning the Federal Government
How it will be delivered
The Australian Spinal Cord Injury Network will be presenting this petition to the Government.