Are privacy laws killing Australians?

Are privacy laws killing Australians?

Summary: Are Australia's privacy laws slowly killing Australians by preventing medical professionals gaining access to patient information?

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Are Australia's privacy laws slowly killing Australians by preventing medical professionals gaining access to patient information?

People fear the consequences of information falling into the wrong hands and therefore, quite rightly, feel the need to defend privacy. But could that "fear", as one doctor calls it, be stopping information reaching hands that could heal us?

This week the Victorian government announced it will pay Deloitte AU$1.3 million to develop an Australia-wide e-health strategy, to introduce online referrals, e-prescribing, and electronic health records.

It sounds like a good idea but it will be interesting to see what impact it will have on the adoption of electronic health records in Australia. Medical professionals appear to want to be able to use electronic records but current privacy laws are preventing it.

"If you go from one hospital to another, the only way your data is going to get from one to the other is if the doctor writes a letter. And there is no electronic sharing whatsoever," said Dr Marienne Hibbert, director of the cancer research project, Biogrid — also part-funded by the Victorian government.

Due to what she believes are fears about privacy, Australian clinicians — at least those participating in the Biogrid project who treat cancer patients — are hamstrung in their efforts to use widely-dispersed information in order to improve the lives of patients, and it's all due to privacy.

"There's a real danger of privacy being too protected — it's people's perception of the risk... It's way out of... Well, it's fear," she said. "If people weren't worried, for a start, I think there'd be much more sharing of patient data for clinical use."

Biogrid currently pulls together de-identified cancer patient data, sourced from over 30 hospitals in Australia, New Zealand, the US, UK, Brazil and Malaysia.

But while researchers are able to learn from anonymised data collected in the Biogrid project, the clinicians who treat patients are unable to make use of it — primarily because the information needs to be attached to a patient's name to be useful. What could be achieved if this were permitted has implications that are far reaching and quite immediate for cancer treatment, according to Hibbert.

"[Biogrid] is research and we can actually integrate data much more effectively than is available for clinical care.

"My clinicians that are involved in this are really frustrated about not having any way of viewing identified clinical information across sites," she said.

If there was a way of providing a "secure and protected" view of cross-site identified information — say across a single tumour stream — clinicians, who are often dispersed amongst several hospitals, could improve their management of cancer treatment.

"Cancer patients are coming and going all the time, they often have had surgery at one site, oncology at another and then radiotherapy elsewhere. If you can provide the clinical view to the clinicians, that would be really helpful. Doctors get so frustrated because they don't have that combined view," said Hibbert.

It's a bit hard to say that if doctors could access identified information from other sites it would reduce the number of cancer related deaths in Australia but it would seem the logical — especially if we are to believe the government's message that the fight against cancer will be won by early detection and surveillance.

But cancer research and saving lives is not the only thing that's being held back. Today, Australians would be hard pressed to use services such as Google Health and Microsoft's Health Vault since the only copy they likely have of their medical history is stuck in their head.

Where is your medical history stored?

Topics: Government, Big Data, Data Management, Government AU, Health, IBM, Privacy, Security

Liam Tung

About Liam Tung

Liam Tung is an Australian business technology journalist living a few too many Swedish miles north of Stockholm for his liking. He gained a bachelors degree in economics and arts (cultural studies) at Sydney's Macquarie University, but hacked (without Norse or malicious code for that matter) his way into a career as an enterprise tech, security and telecommunications journalist with ZDNet Australia. These days Liam is a full time freelance technology journalist who writes for several publications.

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Talkback

6 comments
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  • Not a chance in Hell

    I wouldn't let Google or Microsoft near my middle name let alone dump my medical records on their servers. Imagine what they could do with all this information should they decide to alter their terms of use.

    Think about how these large American companies work - every time you move house you think you escape the reach of spammers, the kind that dump all kinds of garbage in your letter box trying to flog everything from fiction novels to credit cards. Three months later it begins all over again and all this stuff is personally addressed to you complete with a pre-filled out form just waiting for your signature. They even supply a freepost envelope!

    With information that gullible people are about to hand over to Google Health and Microsoft Vault - nup, I ain't having any of it. They could be warming up to start flogging health insurance, discounted stays in hospital for that nephrectomy you may need or on the other side of the coin, selling your information to health insurers so they can 'up' your premiums or simply refuse to cover you.

    Where are the guarantees of privacy? Where is the protection against cyber intruders? What about dishonest doctors?

    Call me paranoid. But cautiousness may end up being a good thing. Think about it before placing any trust in these behemoths.
    anonymous
  • Get serious - your parania may kill you or owrse your family

    Lord Watchdog - you can not be serious?

    Talk about a negative view if the world, have you ever thought that people having access to that information may actually save your life.

    I work in the health sector and let me tell you, no one in this sector actually cares about your health. Many decades ago it used to be the job of your GP, not any longer. For a host of reasons (payment models, need to make money etc) your GP spends a few minutes with you and most just prescribes medicines. If your GP doesn't care then and isn't being a "holistic" manager of you health then YOU need to do it or more importantly you may need to do it for someone you love. To be a wholistic manager of health, you need information about your treatments and you need it centralised.

    Where are your privacy protections? Read the sites, there's lots of them and I'm sure that on the off chance that your privacy is violated then Slater and Gordon (or any other lawyer) will more than willing to sue Google/MS for a few million.

    Trust me, health delivery is MASSIVELY silo'd today, one hospital/provider/doctor has no idea what the other has done. You need to manage this, and using an online tool is the best way to do it.

    Help yourself, or more importantly, help your family and try it.

    PS - I have worked for health insurers too, they are so inefficient and hopeless, your theory of them using your data for bad is laughable.
    anonymous
  • Privacy - it's on a need to know basis

    "I work in the health sector and let me tell you,"

    That could mean anything. You could be a professor of <insert specialty here> or a toilet cleaner for all I know. I was employed at a number of hospitals for seventeen years yet I've never operated on anyone.

    Your whole post is crammed with open-ended statements - how can one possibly gauge how truthful or accurate any part of it is.

    "Where are your privacy protections? Read the sites, there's lots of them and I'm sure that on the off chance that your privacy is violated then Slater and Gordon (or any other lawyer) will more than willing to sue Google/MS for a few million. "

    Exactly... Where are the "protections" [sic]? I am not going to spend four or five hours reading complex terms and conditions statements and I seriously doubt anyone else would bother either.

    As for the rest of the remark you made, it merely amounts to shutting the gate after horse has bolted. Fantastic way to manage things - especially your privacy. I will be taking a far more wholistic approach to that than you obviously will be.

    "Talk about a negative view if the world, have you ever thought that people having access to that information may actually save your life. "

    It isn't negative at all. Google isn't exactly the most philanthroic organisation in the world, in fact they are far from coming anywhere near it. Why else would they be offering this service? Nothing has been mentioned about cost so I am assuming that Google Health with get offered for free. Have I missed some noteworthy statements about what Google intends to do as far as an ROI is concerned? If not then what gives?

    I do not currently have the need for doctors, nurses, hospitals, health insurers or even Google Health at this point in time. If someone suddenly went wrong then I am sure that my family would be able to assist with providing doctors with any information they would need and this would only be necessary if I was unable to communicate.
    anonymous
  • It's more serious than that

    While I agree that LordWatchdog is right -- spamming is an atrocious annoyance and invasion of our privacy -- but his later point is more on the money: the more serious issues about medical records being passed over the internet need to be addressed.

    As one of those Americans he refers to, I am terrified right now about the kind of infringement on our privacy and our civil rights we are experiencing. And who knows how many ways private medical records can be "hacked"? Potential employers, people and organizations "researching" you for various purposes, credit
    report corporations -- do you want an abortion, or a vasectomy, or a breast reduction, or AIDS treatment, or drug addiction, to become public knowledge?

    Take the word of one of those here in the U.S. suffering from loss of privacy and privacy rights -- guard your personal business very, very carefully -- and fight any encroachment on it that you find.
    anonymous
  • Disgusting.

    I think it's a sad indictment that something like this is even being considered. Privacy is meant to be sacred.
    anonymous
  • Security and Privacy

    "There's a real danger of privacy being too protected — it's people's perception of the risk... It's way out of... Well, it's fear," she said.
    --------------------------------------------------------------
    No whats way out is giving people a false sense of security, or privacy.

    Both the UK and US have had numerous leaks, accross P2P networks and even just in the physical transport of systems/data.

    According to http://www.nehta.gov.au/ 80% of australians are in favor of this.

    Have those 80% studied computer security or had the foresight to research into data leaks in other countries

    http://www.securecomputing.net.au/News/136969,medical-data-leakage-rampant-on-p2p-networks.aspx

    And why didn't this 80% include any one that I know?
    anonymous