Flying Blind
The Australian Health Data Series

Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

in collaboration with

Trusting Data Custodians will Transform our Healthcare

~~By Greg Mullins & Lucy Clynes, Research Australia

Could you tell the triage nurse in the emergency department all the medications your elderly parent is taking? Before you go to Bali this winter, do you know whether you’ve ever been vaccinated against hepatitis A? And what was the name of that antibiotic you were allergic to years back?

My Health Record

All this information exists, most likely in the files of a GP or specialist, or a hospital you went to for treatment a couple of years ago. It is probably even stored electronically, but can you get it when you need it? 

The value of our health data extends well beyond its ability to improve the service we receive as individuals. We have increasing expectations of what modern science can deliver in terms of health improvements, and with good reason. Thanks to advances in medicine, life expectancy and in particular healthy life expectancy continues to increase – a child born tomorrow, on average will have a life expectancy 5 minutes longer than a child born today. Thus it is not unusual for children now to know all four of their grandparents and one or more great grandparents as well. The medical advances that have made this possible have been built on information about individuals and patients.

Many promising new drugs work in the laboratory but ultimately, we only know if they work by testing them in real patients. Data collected from patients participating in clinical trials - blood tests, genetic information, XRays and other images, are the real measure of whether a new prospective drug is effective and safe.

When pooled with data from others, it has tremendous power to improve and transform the healthcare we receive and the way services are delivered. Pooling data between and across trials can help us answer the question of why some people respond to treatments and others don’t.  Comparing genetic information between people with particular diseases who have responded differently and with healthy individuals can identify genetic mutations that enable or prevent a treatment working. This can lead to new treatments that can target and exploit those genetic differences, the true dawn of personalised medicine.
Giving researchers access to our health information helps make connections between diseases and their causes - for example the increase in the last 20 years in the incidence of type 2 diabetes, and its link to obesity and other lifestyle factors.

Comparing hospitals’ data on how many patients with the same condition return because of complications can identify underperforming health services that need help to make improvements to benefit patients and reduce waste and cost. Data about patients and where they live or work can help us plan where new health services are needed, monitor new influenza epidemics and identify clusters of disease, pointing to local environmental causes.

In May, the Australian Government released the Australian Productivity Commission’s report on the actions needed to improve how we use publicly held data, including health information. It concluded that there are enormous benefits to individuals, our community and our economy in making more effective use of data, and that this includes providing better access to health data for research purposes.

However, the Productivity Commission also found that there are major barriers to researchers accessing data, and that many of these barriers were unnecessary and unhelpful. It has called for a new approach to the sharing of our data with researchers; one that recognises and seeks to minimise the risks, but importantly also recognises the enormous benefits of improving the ways that researchers can access and use data securely.

The public recognises these benefits and are overwhelmingly willing to share their data for research. Polling conducted for Research Australia by Roy Morgan last year shows that 91% of Australians were willing to contribute their data for health and medical research.
In return for trusting researchers with our health information, the community is entitled to expect that researchers will adhere to the highest standards of confidentiality.

Our government agencies and hospitals (the custodians of our data) need to recognise that the data they collect from us is valuable but that its full value can only be realised when data are made available for research purposes. Governments at all levels must be encouraged to put in place the laws and regulations needed to ensure that health data can be shared securely and confidentially for research purposes.

We already share data with many individuals and companies. Retailers collect information about every transaction and purchase- where, when, how much was paid, what else we bought. They then use this information to provide us with special offers, or direct advertising to us for products they think we are interested in. Better sharing of data with researchers has the potential to deliver much more than a better price on a flat screen TV. We need to encourage our governments and those who hold and store our data to make sure that we all benefit, through a reduction in suffering and premature death and the opportunity to lead healthier lives; so that in the future even more of our kids get to know their great grandparents. 



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