From our CEO

It may have been Professor Sharon Friel who coined the phrase ‘No data, no problem, no action’.

It’s certainly a phrase I have been fond of using for some time. Because, when it comes to political decisions, especially in health care, if you don’t have data, you don’t get a look in.

With this political maxim at the back of my mind, I rolled up to a national workshop of neurological organisations earlier this year. I raised the issue of data gaps, and to my surprise, there was near universal agreement that data gaps were a major problem that confounded advocacy efforts. It’s certainly true for MS.

There was ready agreement that we needed to collectively push a ‘numbers matter’ campaign to secure a national minimum neurological data set.

And we have been doing exactly that. We have been engaged in discussions with the Australian Institute of Health and Welfare (AIHW) and the Federal Health Department, which, to their credit, readily acknowledge the national gap in neurological data.

It should be acknowledged that much of the data around prevalence and impact that does exist, is provided by the cash-strapped non-profit organisations at significant cost.

For most of the major disease groups, such as cancer, cardiovascular disease or diabetes, this data is collected through the AIHW at government expense.

It’s time – surely – that Australia comprehensively collects good data on neurological conditions – conditions that effect 1.6m Australians at a very significant cost to the health system.

Good data drives good resource allocation that, in turn, reduces costs for government.

So, our message to government is clear. Invest to save! A national minimum data set for neurological conditions should have been put in place years ago.

Time to do the right thing. Time to collect the data that matters.


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From our CEO