Sharing health information and the privacy paradox

A survey of consumer willingness to trade digital privacy for greater convenience has found that while Australians and New Zealanders have confidence that governments and organisations will keep their data safe, they are yet to be convinced to give up their online privacy.

The Privacy Index survey, conducted by IDC on behalf of data storage firm EMC, surveyed 15,000 consumers in 15 countries, including 1000 in Australia and New Zealand, to gauge their digital privacy beliefs in six different online areas of activity: consumer, employee, social, medical, financial and citizen.

It asked them the extent to which they would be willing to trade in privacy for greater convenience, what level of confidence they had in institutional ethics and transparency when protecting individual privacy, their confidence in those institutions' skills and abilities to protect privacy, and their confidence in their level of future privacy.

What the survey found was a number of paradoxes. Consumers want the convenience of technology but are unwilling to sacrifice personal privacy to get those benefits, they rarely take any action to protect their own privacy and rely on governments and businesses to do it for them, and while social media ranked the lowest in terms of confidence levels about protecting privacy, they still shared a lot of personal information quite freely.

Globally, the willingness to trade privacy for benefit was highest when it came to medical and government information, as was the confidence level that governments and businesses had the ethics and skills to protect privacy.

Australia and New Zealand shared this confidence but otherwise ranked quite low – 11 out of the 15 countries surveyed – in the privacy index overall. When it comes to medical information, 41 per cent were willing to trade in privacy compared to 47 per cent globally, despite 74 per cent saying they would value easier access to medical records.

However, we did rank higher when it came to confidence in the ethics and skills of governments and healthcare organisations to protect our medical information, with about 65 per cent showing a good level of confidence.

The conclusion that EMC has come to is that people want the benefits of technology without sacrificing privacy, something that has ramifications for the healthcare industry in particular as it moves to more electronic sharing of patient data.

Clive Gold, EMC’s director of healthcare for the ANZ region, said Australians and New Zealanders showed a general resistance to giving up some privacy for more convenience or the benefits that technology could bring. Australia overwhelmingly rejected the Australia Card idea back in the 1980s and it doesn't look as if things have changed that much, despite us all having a Medicare card, a tax file number and an Individual Healthcare Identifier (IHI), whether we are aware we have one or not.

Mr Gold said he wasn't surprised that Australians showed this resistance, but what he was surprised at was the lack of reason for it.

“We can't really work out what the reasons were, because if you have a look at whether people trust that the information might be abused or that the information would be protected, about 65 per cent ... said 'I think they'll do it ethically and I think they'll look after it properly, but I'm not willing to give it up',” Mr Gold said.

“You often hear people say 'I'm not willing to share my record because I think people won't look after it as well as I could', but that is not true here. There are a lot more people who are saying 'I do trust people will look after it but I'm still not willing to share it'.”

In healthcare, where Australia and New Zealand ranked below the average, Mr Gold said it appears that consumers do not see the benefit of having their health records and data stored, perhaps because they have not been informed of those potential benefits.

“To me, that is the big pity behind where we're sitting in Australia right now,” he said. “It probably accounts for why the PCEHR has not had a huge uptake.

“The essence behind trying to measure this is to see whether people's attitudes are going to change over time and I guess we are at a bit of a tipping point where people are asked to provide the data for a future benefit. Perhaps what is missing here is a bit of the education of what that future benefit is going to be.”

Mr Gold said that as we move to more digital transactions for our healthcare, consumers will require more education on why it is going to be a good thing in terms of improving the quality and even the longevity of our lives.

That education would include efforts to convince consumers that sharing data will improve the services the system can provide, make the system more efficient and make it sustainable,” he said. “The future of health is buried in the data. That's the convincing that has to be done because what this survey shows is that it's not a trust issue.”

The survey suggests that about 35 per cent of ANZ citizens have concerns about data security and will need to be convinced that it will be kept safe. “But there is 100 per cent of people who need to be convinced that there is a benefit,” he said.

The survey did show that the majority of people – 81 per cent – believe privacy will erode over the next five years but there is a glimmer of hope for those advocating greater digital transactions, he said.

“I think a lot of people are starting to see that when your supermarket really gets good at understanding what your buying patterns are, the specials they give you are actually worthwhile and they are not just noise and junk mail. As people have discovered that there is value in this, then they will see it is worth their while.”

Posted in Australian eHealth

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