Norway has had a single identity number for all citizens since 1964. It is a practical measure, not contested when implemented, nor controversial today. Here in Australia, Bob Hawke introduced The Australia Card in 1985, causing a double dissolution election two years later. It was ultimately defeated. Over the years, similar schemes have met the same fate, and now the debate rages over My Health Record. What are we so afraid of?
On the odd occasion that I need to access my bank account or a government service back in the country I left 30 years ago, I do so using 11 digits comprising my birth date and a serial number. Plus a secure two-factor authentication system using a dongle or a mobile phone. It is a centralised service owned and run by the banks, tightly regulated.
Virtually every business and government agency in Norway use it as their primary online authentication method. Every adult over the age of 15 has access. It has over 4 million users, 75% of the population. The benefits go beyond being able to log onto online services. The common identifier also means that records about me, my affairs and my transactions are transparently available for the services that need them. The tax department has access to my bank records, who have access to my insurance records, who have access to my health records, etc. But only if I give them permission. Norway’s privacy laws provide good protection, there is little fear of misuse of the data, so hardly anyone refuses permission.
If you’re a law-abiding citizen, conduct your affairs above board, submit your tax returns, have a job or a pension, your data is entered once, and it is combined and matched when needed. If you have nothing to hide except the odd job on the side or making “hjemmebrent” (moonshine), your data is securely available to those that need it. Your workplace, home address and phone numbers are also publicly available. If you move or change anything, you update it in one place, and everyone that needs to, have instant access. It’s convenience made possible by the information technology revolution.
What do we think “they” will do with it? Why is answering a questionnaire from an insurance company or providing the same answers again and again preferable to entering it once and making it available to those that we give permission? Why is this so scary for so many?
The openness of Norwegian society goes much further, too. Everybody’s tax record is available online for anyone to see. If you want to find out who is driving the slick BMW parked in front of your gate, send a text with the rego to the Vehicle Authority and get the name of the owner back — it costs 50 cents.
The contrast extends to openness of government. In Norway, the governing principle of freedom of information laws is that information is available unless exempted (which is limited to issues strictly related to national security). This is in stark contrast to here in Australia where everything the government does seems to be covert unless the information is specifically requested. And even then, government ministers and the bureaucrats will fight tooth and nail to avoid releasing it.
The government don’t trust us, and we don’t trust the government. And not just the government. Australians have a deep distrust of institutions, including big corporations. We used to trust the church, but not after the royal commission into child abuse. We used to trust the banks; now they too, are being exposed for their dishonest ways. Funny thing is, though, we generally trust each other. There is hope in that, even if we won’t give each other a number.
The depth, consistency and access to data in Norway means that there is no longer need for a census; the Norwegian ABS equivalent has all the meta-data it needs. The last census in Norway was in 2011.
So why are we so afraid Down Under?
Kim Wingerei is a former businessman, turned writer, blogger and commentator; passionate about free speech, democracy and the politics of change. He is the author of Why Democracy is Broken — A Blueprint for Change.
27 thoughts on “Why are Australians so afraid of My Health Record?”
Dr E
August 10, 2018 at 1:30 pmThere are multiple reasons for me a a doctor, to opt out of MHR.
The main one, is, I don’t trust the bastards.
I also wonder- how much time will it take a GP or a specialist, to input the data after each visit. Who will pay for this time? GP’s are already overwhelmed by endless clerical work.
As a specialist, I have received no information whatsoever about how to use MHR from a medico’s point of view.
How are pathology and radiology results entered?
If they are not entered, why not?
What, ultimately, does the government want to do with this data?
I understand all the authentication processes but is that going to stop mass hacking of records?
Kim Wingerei
August 10, 2018 at 2:03 pmThanks Dr E. Would be interested to know how much of that clerical work is precisely because of the double (multiple) handling of information which I suppose is what My Health is trying to alleviate?
David Vaile
August 11, 2018 at 3:37 amThe government’s My Health Record is unfortunately not a reliable and useful clinical record system, as those aware of its design and functional characteristics will attest. It was not designed around the confidential and exacting needs of the doctor-patient relationship. It’s data is not signed to reliably complete, up to date, accurate or relevant enough to trust for critical clinical decisions.
(Sloppy, incomplete, out of date data is tolerable for Big Data analytics style secondary uses by government, commercial or other users breaching the confidentiality of that trusted relationship, because they typically don’t contribute to clinical care. The fact that it works for them but not those in the clinical care relationship tends to confirm whose needs it was in practice designed for.)
This failure to focus on primary data quality, interoperability, security and structure, instead substituting random unchecked fragments in whatever format is to hand, including scanned PDF, may explain why so few people, doctors or patients, Opt In when they have a choice, and why all those millions of MHRs that somehow came to be created are more or less never used. (Check the usage stats.)
The pointless duplication of data entry and handling that is created (not the labour savings you’d expect for $2bn and and a decade!) is because it focuses on giving government its own, scrappy fragmented copy of the real records in clinical systems, and this inevitably means needless duplication. The proper task to automate, the hard work ignored in favour of an unsafe and un-useful Canberra-government-controlled shadow record, was the secure, patient-respectful interconnection of all the real records, with access control and auditing promises through the interoperable network that might have been.
Fixing this hard problem, rather than hacking up a non-functional imitation as we have now, would have reduced rather than increased data entry and handling effort for the 900,000 people with unsafe default open access to everything, and been actually useful to doctor and patient.
By choosing to avoid the inconvenience of asking us if we want one, the proponents also avoid having to explain any of this honestly – the fundamentally flawed design which limits its actual usability and usefulness, while pushing its privacy and security risk all the way up to 11.
So instead of fully informed consent, as is necessary in the rest of the medical domain, we have uninformed and non-consensual breach of confidentiality in exchange for limited or no pactical use for most of those in the trust relationship that is being pillaged; plus pointless duplication of effort of some of the busiest and most skilled people around.
And instead of frank and unbiased information with which to make up our minds, as you normally can legally insist on in medical matters, we get ‘nudge’ and sneaky spin and manipulative UK-style Behavioural Economics Unit framing tricks designed to invite everyone not in the know to project their quite sensible expectations onto the government’s MHR – without enough real information to realise that most of the promises are misleading, and that the real beast is something different and altogether disappointing and unsafe when you get up close.
Jimbo from Logan
August 10, 2018 at 1:53 pmBecause we don’t trust the government and they have proven by their actions that we are right not to trust them.
Desmond Graham
August 10, 2018 at 2:19 pmThere is no comparison between the countries.
The Norwegian government has limitations and the public servants advising the pollies remind them of the limitations of government especially their spending is restrained .. The Norwegians have one of the largest sovereign funds, the politicians cannot get their hands on it. Our mob would spend it in 3 years with useless unproductive handouts. The Norwegians can roam their country without charge by tradition and law on all non free hold land – none of this paying this fee or that permit to enter land spuriously assigned to groups who make the loudest noise. Above the Arctic circle the government assists young people wanting to start a business. The local area has relative large say what happens locally – the list of differences is so vast that any comparison to our system of command and control by public service and politicians that any comparison , other than that the populace of both countries vote is really useless. They have a relative trust in their levels of government whereas we do not trust any of our public services from local councils upwards- with good reason look at Sydney councils ,look at the Victorian Government ministers misuse of public funds , look at Turnbull’s off the cuff public donation of public monies to mates. So Health records, your and my data now become public assets to be traded [without consent].
Kim Wingerei
August 10, 2018 at 2:45 pmThey are valid points Desmond. Not sure about it being much difference in local/council authority, but there certainly is more of a lack of trust in government here – I wonder, though, was it always so?
jmendelssohn
August 10, 2018 at 3:05 pm“Was it always so?” I’m guessing since about the beginning of 1788. A convict colony, made up of what was effectively England and Ireland’s underclass – with some Scottish political dissidents thrown in for good measure. They were overseen by the NSW Corps, hardly the superstars of the British military. Corruption aka the Rum Rebellion, followed. Later, after the end of the Napoleonic wars, surplus ex-soldiers were shipped out to become the NSW police – because the British authorities were scared of another French Revolution.
That entrenched pattern of distrust between the government and the governed did not shift with the Gold Rush, if anything it got worse. And so it goes…
I’m not sure how to break the pattern, but it might help if our governments started to behave in a more trustworthy manner. Instead they seem determined to do the opposite.
Kim Wingerei
August 10, 2018 at 4:01 pmAfter 30 years in this beautiful country I still observe with the eyes of an outsider, and I think you are absolutely right. It runs that deep.
frogmouth
August 10, 2018 at 5:52 pmMr Wingerei has -perhaps unwittingly – hit the nail on the head. There is a great asymmetry in expectation. Central authorities seek to know all and share all about citizens, without willingness to themselves be transparent, either in how private information of citizens is used, or in what they are themselves doing behind closed doors. People who have nothing to hide resent that those who do have something to hide can do so, and reflexively seek symmetrical privacy. Knowledge is power, and those with something to hide ( which includes the state) would loose power through increased transparency.
lily
August 10, 2018 at 5:57 pmAs an Aussie expat living and working in Sweden, I have found it to be 100% true that the personnummer (same kind of number Kim is talking about here) is massively useful and convenient. As is the bank-ID authentication. But no WAY would I want the Australian government holding onto the same information.
Remember when they tried to hold an online census and everything possible went wrong? Their MyGov website system is completely unusable when you stop using a specific phone number without remembering to change it first. Their tax system fails to remember my previous group certificate information every. year.
Even as a newcomer, I trust the Swedish government way beyond what I do the Australian. There are more checks and balances, a greater level of responsibility and accountability, and just a way better track record. I would love a personnummer system in Australia, but only when they show us, over a significant period of time, that they can be trusted with the responsibility.
Until then, painstaking, awful, complicated tax returns and filling in insurance forms are worth the relative security.
jase
August 10, 2018 at 7:10 pmWhile a central source of data in a utopian world sounds great, how about those patients that have a genuine need for privacy.
Escapees of domestic violence may not be able to go about their lives peacefully and could live in fear that their identity and location is now on a platform that is available for too many to see. We only need to Google “sa health staff sacked” for a brief synopsis of some misuse of medical records.
There is also no indication if pathology or other results could be made available for prospective employers Doctors to review.
Take for example a hypothetical case of a pathology result uploaded against the wrong patients record that indicates a history of illicit drug use, a pre employment test is being conducted and a registered medical professional reviews this data and advises the prospective employer against employing the person, all meantime the prospective employee is unaware as to why their job applications are routinely never successful.
There is no understanding of how many other industries may access your information and also make decisions that may impact directly outside of the health arena (think insurance premiums etc.) .
What also concerns me is that it has been communicated that you can delete a record but then reinstate it.
If this is possible we are not deleting any data, just hiding it from view.
My suspicion is we will all have a myhealth record whether we like it or not, just some will be hidden from view while others will be available.
Like all systems they are only as safe and secure as the technology applied and the ethics of those that administer and have access to them.
Just because a law says you can’t do something it hasn’t stopped those that are compelled to break it in the past and it won’t stop them in the future – court records are a testament to this.
Like many others, I have opted out – I am also a Paramedic, informed consent and privacy are two pillars of ethics strongly ingrained within the Australian Medical Professions unfortunately I believe that the implementation of Myhealth record would fail to meet either of these tests .
I also don’t think “down under is afraid”, we are gun shy as a result of every failed government initiative to date, and don’t see things changing soon (most of us are still trying to understand what our governments from all sides of politics were doing messing around by establishing the NBN).
NB
August 10, 2018 at 8:37 pmThe Norway approach is wonderful, both in managing information about its’ citizens, and being open with information about its’ government. I wish we could be like this.
As to the bottom line about my health record, it is spelt out by Kerryn Phelps in the below article.
https://www.couriermail.com.au/rendezview/as-a-doctor-heres-why-my-health-record-worries-me/news-story/0584c4b6ff55f2936fe4e84f3985bdb6
Helena Ravenclaw
August 10, 2018 at 9:15 pmI moved interstate and changed my name so that my unstable, potentially violent ex boyfriend couldn’t find me.
I know so many women who would be justifiably horrified if it was possible for all the men they had met socially or worked with in their life – sleazy bosses, obsessive acquaintances – to readily find their home address and and personal details.
Perhaps Norway doesn’t have these problems – but if so, Norwegians are very lucky.
David Vaile
August 11, 2018 at 4:06 amAnother more useful comparison from Northern Europe would be between the modest, clinically useful and fairly safe Scottish electronic health record, which is up and running, and relatively successful and trusted; and the utter failure of the grandiose maximalist English ‘Care.data’ scheme (whose architect Tim Kelsey left the country after it failed, and happily now runs the ADHA and the government’s My Health Record here).
UK Care.data was suspended in 2014 (as the MHR should be now) and quietly abandoned in 2016, after many governance, privacy and security concerns arose, including when some whiz kid consultants to the operators just exported almost the whole English hospital data set to a Google analytics platform offshore to play around with (exposing it to the omnivorous and lawless Google’s very unfavourable Terms of Use).
The cautious, respectful and safer Scots EHR system would have been a better guide for us than the overblown, failed English Care.data system – what have we done to deserve this latest Big IT fail from the Feds?!
David Vaile
August 11, 2018 at 4:20 amI understand there are also a number of family law legal practitioners who are concerned that the MHR will become significant in custody and other parental disputes, with joint access given to anyone who has a child on their Medicate card, thus opening up another potential mechanism for violent ex-partners to use to track down the other partner after they leave to try to start a new life.
There are also powers to subpoena records like this in family disputes, independently of direct access. While that could also apply to other old style medical records, a new doctor’s surgery would be much harder to find and serve an order on than ADHA and its sitting-duck centralised honeypot.
(ADHA have recently confirmed they are obliged to comply with such court orders.)
Kim Wingerei
August 11, 2018 at 10:24 amFair points, Helen, and although Norway is a long way ahead when it comes gender equality and stories of harassment and worse as you mention are rare, it still happens, and the options to stay more anonymous are there.
Bob the builder
August 10, 2018 at 11:21 pmGiven all that is known about the manifest failings of the Health Record, Mr. Wingerei must be the only Norwegian who didn’t get an education in basic reasoning.
The systems are so different.
I’m not going to waste my time enunciating them here, but why, Crikey, did this puff piece get past the gatekeepers?
Bob the builder
August 10, 2018 at 11:21 pmGiven all that is known about the manifest failings of the Health Record, Mr. Wingerei must be the only Norwegian who didn’t get an education in basic reasoning.
The systems are so different.
I’m not going to waste my time enunciating them here, but why, Crikey, did this puff piece get past the gatekeepers?