New Poll: Australian’s will share their personal health data if privacy protected

Media Release: Wednesday, 7 September 2016

Some 91 per cent of Australians would be willing to share their de-identified medical data if it went towards research purposes.

That’s just one of the important findings from a Roy Morgan Research poll conducted on behalf of Research Australia as part of their annual national Australia Speaks study.

“What scientists and researchers need is data to develop new treatments and to track changes in the rise and fall of diseases over time,” said Research Australia CEO, Nadia Levin.

“The Australian health system has not effectively supported the collection and use of health data for research purposes in the past – and what we are saying is that the privacy considerations and other barriers can be overcome with enormous benefits as a result.

“Around 4.1 million Australians currently have a My Health Record and we need to increase that number so that researchers can access de-identified data and put it to work to find new cures.

“Right now there are trials underway in the Blue Mountains and North Queensland of an opt-out rather than opt-in system for My Health records, and that holds great promise for researchers and for improving the health of all Australians.

“If we make better use of our Australian data to understand our own health needs, we can develop solutions that lead to new and better drugs and therapies for ourselves. The logical next step is taking homegrown innovation to international markets.

“Put another way, there is a very real possibility that the mining boom of the future could come from mining our own health data.

“It is encouraging to see significant levels of support for data sharing as we continue along the My Health journey.”

According to the research:

  • 79 per cent of Australians would be willing to share their data if it went towards advancing medical research;
  • 74 per cent would support it being used to improve patient care; and
  • 60 per cent supported health officials using it to track diseases.

    Ms Levin said that with a broader update of My Health records, we will see more data available and less reliance on paper records – all part of a contemporary society that uses accessible and available technology to achieve the best possible outcomes

“Whilst privacy has been raised as an issue in e-health, this data shows that if data can be protected and is used to improve the health system, Australians support it,” she said.

“This is absolutely doable – we can protect privacy and at the same time mine the data to improve our health system.”

The poll also showed that the community is increasingly turning to technology to improve health outcomes, and is willing to share that information with medical researchers.

According to the poll, one in five Australians (19%) say they use an activity tracking device like a fitbitTM daily or nearly daily to track their activity.

And three quarters of regular device users would share the data if they could not be individually identified.

The poll also shows patients use the internet as an additional medical information source, and are open to being referred to reliable sites from doctors;

  • 89% of Australians reported consulting a doctor in the last 12 months, and 73% of this group had used the internet to find out more about something their doctor had told them.
  • The age group most likely to do this was 25-34 years olds (82%), but even 69% of those aged 65 and over had used the internet in this way.
  • Just over one fifth (21%) reported that their doctor had suggested a website where they could find more information, but only one in 10 had asked a doctor to suggest a website.
  • Despite these relatively low numbers, three quarters (77%) reported that they would find it helpful if a doctor suggested a website they could visit.
  • 87% of Australians support the Federal Government’s investment in the Medical Research Future Fund (MRFF).
    Research Australia is an alliance of 160 members and supporters advocating for health and medical research. Download a full copy of the poll
    Media Contact: Phil McCall 02 9234 3822 or 0438 619 987

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