Spinal cord injury experts have lobbied the Federal Government to establish a national register tracking the treatment and condition of patients.
Advocates believe more data could save the health system millions of dollars and improve the outcomes of people living with spinal cord injury (SCI).
Chris Bertinshaw from the Australiasian SCI Network said very little data was kept on people living with a spinal injury.
“We have pools of acute data in the spinal units around Australia, we have some rehab data,” he said.
“None of it is connected, and we have no information once they leave rehab.”
In fact, experts are not sure exactly how many people are living with SCI in Australia – though some estimates put it at about 10,000.
SCI patient and wheelchair racer Jonathan Tang said the lack of community-based information made ongoing care difficult.
“We don’t know what treatment works and what doesn’t work, and we don’t know the risks involved,” he said.
Tang started racing semi-professionally last year, returning to elite sports four years after sustaining a spinal cord injury.
“I used to be an elite gymnast, I was training for some selection games when one evening at my training I had a fall,” he said.
“I landed on my neck.”
The proposed registry would track patients throughout their lives, capturing individual treatment, complications and medicine provided.
“[A registry] will allow us to answer questions such as, if I had a kidney infection, what would be the best medication to use,” Tang said.
Call for $5 million over five years
Advocates have called for $5 million over five years to establish the registry, saying it could then be self-funded through the sale of anonymous data and fundraising.
The proposal was strongly backed by SCI patient Phillip Morris, who was first injured a decade ago.
“At the time, I had almost no function below my neck,” he said.
Mr Morris said his recovery had been a remarkable but slow process; he can now walk and move independently.
He attributed his recovery to a range of treatments, including hydrotherapy, but said his experience could not be extrapolated to the rest of the population.
“You can’t just use a single case like to own to say this works or that works,” he said.
“You actually need to generate data on hundreds of patients.”
Australia already manages a number of high-quality registries, including one for dialysis and renal transplants.
Spinal surgeon Dr Ralph Stanford said the country’s strong medical infrastructure meant a high-quality SCI register was within reach.
“We could provide a good database that has high enrolment and good long-term follow up,” he said.
“This could become a world-leading database.”