My Health Record

What we and others think of My Health Record

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Latest:

It’s been about a year since all those who did not opt-out were registered for a My Health Record.

Australian Doctor News published an article on 12 February summing up what many doctors think of the system. Many of the comments to the article supported these views. Many of those who think My Health Record is useful cited specific circumstances, or features and tended to claim that the system has potential. The obvious reaction to this is that after getting on for eight years in operation and over $2billion spent, “potential” is a bit of a weak justification.

The full article can be viewed here The 2.9 million reasons why My Health Record is still wasting GP time

We also note that the ADHA has stopped producing detailed weekly statistics and now only publishes vague numbers (i.e. rounded) and does not include the number of Shared Health Summaries uploaded. This was a useful statistic as it indicated how many GPs were taking the system seriously.

The Department of Health Also used to produce even more detailed statistics broken down by PHN. The last set was published in May 2019.

It would seem that there is not much good news in the statistics being gathered. If there were, the government would be shouting the success from the rooftop.

The silence is deafening.

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(November 2019) Wild Health 2020 produced an interesting critique of the Australian Digital Health Agency, the body responsible for maintaining and supporting the My Health Record:

Who invests more than $260m per annum on a venture where there are no meaningful measurements of return on investment?

ADHA: you can’t manage what you won’t measure

The last section is worth repeating here:

Accountability and ROI

“There is no question that ADHA has a very difficult task identifying and executing policy and projects which will facilitate the Australian healthcare system to be optimised through the sensible application of digital technology. Projects, such as the MHR and secure messaging, are complex and at times inescapably messy, so being able to identify starting points and end points, and where we should be in between, was never going to be easy.

But as things stand today, we spend upwards of $260m and more each year and there is no meaningful attempt to measure progress or value for money for our investment. No one would do that in the private sector. Why do we think it’s OK to do it with taxpayers money?

By the way, governance starts at the top. It isn’t the ADHA’s fault necessarily that it isn’t reporting progress and ROI properly. Agencies like the ADHA have strict constitutions and governance set by their masters. In this case the masters are COAG and the Department of Health.”

Comment – In essence, the question is this: “what do we get for the massive amount of money (well over $2 billion and increasing” that has been spent on the My Health Record Initiative?”.

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There is a report in the Daily Telegraph (1 March 2019) about plans for a major “training event” that was to be held by the ADHA in May at the Sydney Cricket Ground.

The agency in charge of the My Health Record had planned a $100,000 training event at the SCG

The planned event was revealed at Senate Estimates where the CEO of ADHA made certain statements about the event. News Corp claim to have documents that appear to contradict what the CEO said before the Senate Committee.

We cannot verify the claims, however, for an agency charged with protecting the personal and health data of most Australians, this will do nothing to engender trust in the My Health Record initiative.

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In February 2019 the government reported that 2.5 million people have opted out. (see links below for media coverage, starting at #240)

They claim this is a “participation rate of 90%”, which of course is nonsense. Just because people didn’t opt-out doesn’t mean they have agreed to participate. And nobody has consented to be registered – it’s been assumed.

It is obvious that the government has done its best to say that only 9.9% of people have opted out, which is another nonsense.

The real opt-out rate is much higher than that if you are more realistic about the number of people who could have opted out. This would be those who aren’t already registered (6.45million), those who found out about it, those who had the technology and skills to opt out on line, those who had the time to sit on the phone, those who are literate enough (according to the ABS 46% of Australians are not literate enough to do simple tasks).

The real opt-out rate is probably closer to 25%.

This debacle needs to be seen in the light of the “Evaluation of the Participation Trials for the My Health Record” Final Report November 2016

It says this:

“The opt-out rates of individuals in opt-out trial sites was low (1.9%), which is in line with international experience with opt-out systems for electronic health records.”

Two comments

a) 9.9% (which is the absolute minimum estimate of the reported opt-out rate and is probably a gross underestimation) is way higher than the 1.9% in the trial

Conclusion? the opt-out trials were very poor predictors of the full opt-out. The opt out trials and the subsequent analysis look as though they were designed to deliver the preconceived notion of Canberra bureaucrats.

b) The international experience of opt-out models is about 1.9%

Conclusion? The Australian experience is a dismal failure – the opt out rate is over 10 times that of international experience.

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The opt-out period has ended. In about a month, all Australians who are not already registered or who have opted out (in the recent period, or in the trials) will be registered for a My Health Record.

This does not mean you will get “an online summary of your key health information” as the government promises.

This is what the government says about your new My Health Record:

Past and sensitive clinical information

Will my past medical history be in my record?

Your previous medical history such as older test results and medical reports will not be in your new My Health Record.

When your new My Health Record is activated, when you or your doctor or pharmacist access it for the first time, there may be little or no information in it.

There may be around two years’ worth of Medicare/PBS claims history from your doctor’s visits and medicines a pharmacist has dispensed for you.

If you want details of your medical history to be added to your My Health Record, ask your GP to add a summary next time you see them.

If you wanted to opt-out but couldn’t or didn’t, then you can call the System Operator and request that your record is cancelled. It is not clear if you need to wait until you are registered or if you can request it not be created.

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This report from News Corp casts doubt on the Federal government’s claims that My Health Record can saves lives.

“The Government says the $2 billion My Health Record will save your life in an emergency but there are major problems with that claim – ambulance paramedics can’t access the record.

Paramedics are often the first responders in a medical crisis and information on the My Health Record about a person’s medical conditions and medications could be crucial in determining how to treat them in an emergency.

However, News Corp has contacted ambulance services in every state only to be told they can’t access the My Health Record.

The Australian Digital Health Agency, which runs the record, confirmed that, more than six years after the record was launched, access by ambulance paramedics is “not activated yet”.

Worse still, one in four of the nation’s hospitals and health services aren’t connected to the system so they can’t use it when a patient comes in an emergency.”

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The ADHA annual report, made available during the Christmas break.

The case study on emergency department use of medical records makes great use of overseas publications and references to systems that are very different from My Health Record, which is not a clinical record, has little or no medical history and is mainly for patients. The government’s website advises that it should not be relied on for clinical purposes.

For example (page 67):

In emergency departments, consulting a patient’s medical history via electronic medical records was associated with significant reductions in seven day re-admissions*

*Compared to patients whose histories were not viewed

Source: Ben-Assuli O, Shabtai I, Leshno M. The impact of EHR and HIE on reducing avoidable admissions: controlling main differential diagnoses. BMC Med Inf Decis Mak.2013;13:49. https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/1472-6947-13-49

81% of emergency clinicians surveyed rated shared medical records as helpful or very helpful.

Source: Morris LM, Brown C, Williamson M, Wyatt JC. The Scottish Emergency Care Summary-an evaluation of a national shared record system aiming to improve patient care: technology report. Journal of Innovation in Health Informatics. 2013;20(1):41-9. https://hijournal.bcs.org/index.php/jhi/article/view/46/40

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The Australian National Audit Office is conducting a review of the My Health Record system.

This will be the first independent assessment of the initiative.

“The objective of this audit is to assess the effectiveness of the Australian Digital Health Agency’s implementation of the My Health Record system.”

More details are available here

It is due to report in October 2019

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“Legislation passed by the Australian Parliament on Wednesday will make it possible for citizens to opt out of the My Health Record digital health program at any time.”

Australians can now opt out of My Health Record at any time Sam Varghese, itWire

But don’t forget: legislation can be changed by future governments.

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“one of the most respected and experienced digital health experts in the world … told senior leaders in the ADHA that the MHR project as it stood today was a waste of time and money for Australia.”
Global health leader says pivot MHR now Jeremy Nibbs, The Medical Republic

My Health Record technology is 23 years out of date, Harvard technology guru says Sue Dunlevy, News Corp Australia

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The recently-released 2018 Unisys Security Index found that one-third of Australians are uncomfortable using a centralised EHR, with the top reasons cited as concerns over security and a feeling that they are not in control of their identities.

Please note, My Health Record is not a centralised EHR, it is a summary system owned by the government

Media Release 9 November 2018
The opt-out period should be extended and My Health Record properly evaluated

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The Senate Inquiry

The Senate inquiry has issued its report

Senate Report, issued on 18 October 2018

The Recommendations from the Senate Inquiry:

Recommendation 1

The committee recommends that record access codes should be applied to each My Health Record as a default and that individuals should be required to choose to remove the code. The committee further recommends that the ability to override access codes in the case of an emergency should only be available to registered healthcare providers for use in extraordinary and urgent situations.

Recommendation 2

The committee recommends that the Australian Government amend the My Health Records Act 2012 to protect the privacy of children aged 14 to 17 years unless they expressly request that a parent be a nominated representative.

Recommendation 3

The committee recommends that the Minister for Health amend the My Health Record Rule 2016 to extend the period for which a My Health Record can be suspended in the case of serious risk to the healthcare recipient, such as in a domestic violence incident.

Recommendation 4

The committee recommends that data which is likely to be identifiable from an individual’s My Health Record not be made available for secondary use without the individual’s explicit consent.

Recommendation 5

The committee recommends that the current prohibition on secondary access to My Health Record data for commercial purposes be strengthened to ensure that My Health Record data cannot be used for commercial purposes.

Recommendation 6

The committee recommends that no third-party access to an individual’s My Health Record be permissible, without the explicit permission of the patient, except to maintain accurate contact information.

Recommendation 7

The committee recommends that the Australian Government amend the My Health Records Act 2012 and the Healthcare Identifiers Act 2010 to ensure that it is clear that an individual’s My Health Record cannot be accessed for employment or insurance purposes.

Recommendation 8

The committee recommends that access to My Health Records for the purposes of data matching between government departments be explicitly limited only to a person’s name, address, date of birth and contact information, and that no other information contained in a person’s My Health Record be made available.

Recommendation 9

The committee recommends that the legislation be amended to make explicit that a request for record deletion is to be interpreted as a right to be unlisted, and as such, that every record is protected from third-party access even after it is deleted, and that no cached or back-up version of a record can be accessed after a patient has requested its destruction.

Recommendation 10

The committee recommends that the Australian Digital Health Agency revise its media strategy to provide more targeted comprehensive education about My Health Record.

Recommendation 11

The committee recommends that the Australian Digital Health Agency identify, engage with and provide additional support to vulnerable groups to ensure that they have the means to decide whether to opt out, whether to adjust the access controls within their My Health Record and how to do this.

Recommendation 12

The committee recommends that the Australian Government commit additional funding for a broad-based education campaign regarding My Health Record, with particular regard to communicating with vulnerable and hard to reach communities.

Recommendation 13

The committee recommends that the Australian Government extend the opt-out period for the My Health Record system for a further twelve months.

Recommendation 14

The committee recommends that the My Health Record system’s operator, or operators, report regularly and comprehensively to Parliament on the management of the My Health Record system.

Comments on the Recommendations:

This is the first and only independent review of the My Health Record system. It has attracted a wide range of opinions, views and concerns.

Much of the report is political and has been phrased in a particular manner and sometimes it is necessary to read between the lines or look behind what has been said.

Recommendation #1 says that access to a patient’s health records is far too easy and that the default should be no access. Considering the aim of the systems was to make access to health data much easier, this is a damming criticism of the whole system.

It was observed by some before the report came out that making access codes the default would return the system to opt-in. In fact it goes far beyond that – it says that patients should have to actively decide who sees their data. This probably makes the system totally unworkable. It could well be that the committee is aware of this and that it is a politically acceptable way of saying – scrap the system.

Many of the other recommendations also concern issues around access.

Recommendations 10 through 12 are a savage criticism of the ADHA and its pathetic media strategy.

Minister Hunt’s immediate rejection of recommendation 13 “We will not be extending it further as it would not be appropriate to delay the benefits to patients” is completely in line with the government’s one sided view of the system. They can only see benefits (which have never been justified) and take no account of the costs and risks, many of which have been detailed in the Senate report.

The unintended consequences of the move to opt-out is that it has highlighted the flaws and risks in the system.

The Senate Inquiry (written prior to the report being issued)

The Senate is conducting an Inquiry into the My Health Record system. The APF has lodged a submission that has been accepted and which is available here:

Senate Inquiry Submissions

Transcript of our evidence

Links to coverage of the Inquiry are below.

The most worrying aspect of the Inquiry and the many postings on Social Media promoting the scheme, is the naive assumption that My Health Record is a comprehensive patient health record. It isn’t, it is a summary system and requires significant cost and effort by patients and their doctors to create and keep accurate and up-to-date.

It is also not an implementation of the original design which incorporated a network of health data repositories somewhat like the APF, Professor Phepls (ex president AMA) and Grahame Grieve are all recommending at the Inquiry. As Grahame says in the HealthIntersections submission

“The design of the system and the standards it is based on were state of the art in 2007. Although a more distributed design was initially planned, it is now, unfortunately, a centralised national database of static summary documents. This was an inevitable consequence of the technical standards used at the time, but now constrains the use, extensibility and therefore the value of the system.”

and

“Grieve also claims Australia is “clearly lagging behind other countries” that are prototyping innovative digital approaches to solve healthcare problems, and also risks stifling innovation here through the focus on its centralised data repository.

Successive governments have had a strong focus on building towards the success of the MyHR. The result of this is that all other health IT projects are forced into the strait jacket of the centralised document store with its limited consent model, or they are de-prioritised and/or unfunded by DOH or ADHA.

The industry expects that this narrow focus will become more intense after DOH makes another round of investment in the system (re-platforming).

An ongoing focus on a centralised document store with inflexible consent arrangements will ensure that the political controversy continues. Suppressing other options will continue to raise suspicions that the government is seeking to gather and use people’s healthcare data and/or restrict innovation in healthcare.”

We are not alone in our view that the My Health Record is seriously lacking in its benefits to patients and health care providers

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Comments and Information on My Health Record

The Australian Privacy Foundation recognises that electronic records, carefully designed and implemented to support clinicians, can assist with health care.

These record systems need to enable health professionals to make better decisions, be intuitive to use, be adaptable and in no way make their jobs harder than they are already.

They should also make the lives of Australians better and safer, not increase the risk of harm, even suicide. A recent claim by Dr Bob Walker, a practicing GP, seriously suggests that by going to opt-out, My Health Record could have a negative impact on the health and well being of young Australians.

For the past ten years he has been running student clinics in his local Y11/Y12 State Co-Ed College in Tasmania. They have been highly successful by providing non judgmental, evidence based advice in strictly confidential surroundings.

The clinics are easy access/drop in and all students are bulk billed. The local path lab provide bulk billed tests and he records and prescribes using practice software. In this time they have clearly dropped the pregnancy rate, significantly limited the spread of sexually transmitted diseases and done a lot of good mental health work. Not one of the students who have engaged with the clinic in this time have taken their lives.

However, Dr Bob says the arrival of My Health Record is a total disaster as his clinics will be a lot harder to run. After a lot of soul searching he plans to close the clinics on 15 November – a very backward step for youth health. Read the full story here [8] and these reports [51] [109] [126]

There are two major problems with My Health Record that are insurmountable i.e. the basic design is flawed. The first is that it is government owned, the second is that governments of the future can change the laws regarding the use of My Health Record Data. See our media release [6]. This is a good article that describes these risks [46]

Unfortunately, simplistic IT solutions that gather large amounts of raw, un-managed patient data, which can be matched with other data sources, which are onerous to use, and which are easily accessible over the internet, potentially by hackers, can create far more insidious problems than they solve. In our opinion the My Health Record falls into all these categories.

It is also worth noting that My Health Record is a summary system, is not a real health record like the ones your GP and hospital might hold. It is like comparing a bicycle with a 4+4 SUV. Both will get you to the local shops and back for a paper, but the SUV does far more.

Furthermore, the gung-ho attitude of technology specialists and the politically driven decision to make the My Health Record opt-out means that patient trust, patient choice and patient care are being put at major risk.

The risks to your privacy, confidentiality and information security need to be balanced by the value of your health records to you and your health care providers. In our assessment, because it is not really your health record but a less-reliable copy, the My Health Record has little value for either your clinicians or you as a patient: you both need the real thing. This means the risks to you may be high enough to question whether My Health Record is worth it.

In an article in the Guardian, [21] Julia Powles currently visiting UWA Law School says “legal authority does not necessarily command social legitimacy,” as explained in a superb analysis in the Journal of Medical Ethics. “A parliamentary majority may allow legislation to be passed,” the authors state, “but that does not equate to a societal seal of approval or to securing the trust and confidence of patients, citizens, healthcare professionals and researchers.” In other words, the government has not earned the right or trust to implement such a privacy invasive system.

Most clinicians already use an electronic medical record system. These can be improved by better communication between existing systems, not by introducing another, less useful, less secure copy in a system that has some of the hallmarks of a scheme designed for surveillance and less-controlled disclosure, rather than your healthcare.

It is not generally known but the government has several mechanisms by which they they pay GPs to upload your health data. In other words, GPs are selling your health data to the government. They do this at the expense of time available to attend to your needs you during consultations. Just watch your GP next time you see them and observe how much time they spend with their eyes on their computer screen and not you. Do you feel like a patient or a product being sold?

There are many other things the government is not being open and transparent about. If you look at their advertising material or the government’s website myhealthrecord.gov.au there are many claims about the alleged benefits of having a My Health Record. What you won’t find is anything about the costs and risks.

Neither will you see anything that tells you that you are responsible for your My Health Record – nobody else is. It is up to you to ensure that it is accurate, up-to-date and fit for purpose – i.e. it does what you want it to do. If you are not comfortable taking on this responsibility, or are not able because of a lack of internet access or skills and doing it for the rest of your life. Then you would be well advised to seriously consider opting-out.

Recommendations to the government regarding a move to opt-out

The government engaged Minter Ellison to develop a Privacy Impact Assessment Report on the proposed Opt-out Model. [102] The first recommendation was:

“ensuring that individuals are made aware (through communications and collection notices) how their personal information will be handled and by whom, and how to opt-out or adjust privacy control settings, so they can make informed decisions in relation to the management of their privacy;”

Reading this and the detailed recommendations in the PIA report, it is obvious that the government has totally ignored this advice and neglected t conduct an exhaustive campaign to inform all Australians of the move to opt-out.

One can only ask Why? Did they really think the Australian people would not notice that their privacy was being attacked?

How to opt-out of My Health Record.

Note: This is for Reference only. The opt-out Period has closed

Go to this website and follow the instructions

You will need:

Your Medicare card or a Department of Veterans’ Affairs (DVA) card; and

One of the following forms of current Australian identification:

your Driver licence, or
your Passport, or
your ImmiCard

If you don’t have these, but still want to stop a My Health Record from being automatically created, you can call the Help line on 1800 723 471.

Why you might consider opting out:

The government is giving every impression of only being interested in getting its registration numbers up so it can claim it is a success. It is not concerned with the My Health Record being useful or being given to people who should really think carefully before allowing their details to be included.

Nowhere does it discuss reasons why you may be better off not having one, or at least why you should think about not having one.

Here are some reason why you should think twice about becoming involved:

You do not feel comfortable, or are not able to, take responsibility for ensuring your My Health Record is accurate, up-to-date and fit for purpose;
If you have a medical condition that can lead to discrimination (STI, AIDS, Depression / Mental Illness, Diabetes etc);
Where you wish to keep your contact details confidential.This might be from someone who might do you harm if they know where you live. e.g. an abusive partner, someone subject to an AVO etc.It could also be because of your employment – a policeman/woman a government official etc;
If you have, or have had, a medical condition that could cause embarrassment;
If you are being treated for an addiction that might cause law enforcement agencies to investigate you.
If you are a public figure and do not want your health and/or personal details made available;
If there is a risk that an insurance company may wish to obtain your complete medical history;
Where you feel you cannot properly manage your health record because of age, ability or economic circumstances; and
If you believe that the government may link your health data, your census data and/or your telecommunication meta data.

The Flight Safety Group of VIPA, representing pilots from the Virgin Group (Virgin Australia Airlines, Tiger Airways and Virgin Australia Regional Airlines) has “issued a warning to all pilots to not participate in the My Health Record” [11]

Hepatitis NSW say [12]:

Some people may find their My Health Record places them at risk of stigma and discrimination or may cause safety issues.

You may wish to carefully consider whether you want your health records held or shared if you:

have a criminal record or are affected by the criminal justice system
use or have used drugs
live with a lifelong transmissible condition such as HIV or hepatitis B
have or had hepatitis C
are not on treatment after it was recommended
are sexually active and test regularly for STIs
are or have been a sex worker
are transgender or intersex
are bisexual, lesbian or gay
have lived with mental health issues
have been pregnant or terminated a pregnancy
are a health care worker.

Alternatives to Opting Out

Pseudonym

The government is not going out of its way to publicise this but it is available. You have to get a pseudonym IHI (Individual Health Identifier) from the Department of Human Service.

It is possible to have two My Health Records, one in your name and one with using a pseudonym.

Details are available on the government’s website. This is a link to the form you need to fill in

Control what is in the record

Register yourself for a My Health Record (or wait until you have been registered), go and see your GP and between you arrange to empty out the record of all except the data you want to remain visible.

You might want a simple Health Summary with basic but minimal information. That way you wouldn’t draw attention to yourself as wanting to opt-out and you would know what might go to the various bodies entitled to see data from your record.

Create and Carry your own Health Record

Why rely on government run technology with its dangerous privacy risks? All you have to do is write your own, or get your GP to do it for you.

For your GP to do it is probably no more effort than it would be to upload it to My Health Record, except it would have the added advantages of being highly focussed, it wouldn’t have all the extraneous data that clutters up the government’s database and there would be no risk of other documents being included to confuse health specialists who need to assimilate the data quickly.

It would also mean that, unlike My Health Record, you do actually have full access control. If you are concerned that some information is private, you can have different documents for different purposes.

You can carry a printed copy; put it on a memory stick along with a password; include details of how to get hold of the password in an emergency and hang the memory stick around your neck; if you are into high tech, you can encrypt it and put it in a cloud somewhere; your family and/or partner can have a copy.

There is no need for the nanny state to be involved at all in collecting and making use of your health data.

Security

Not everyone believes the government’s claims regarding the security of My Health Record.

Media reports have the (Health) minister (Greg Hunt) assuring Australians that the national online health records database features “military-grade security”, but there’s no such thing as “military-grade security” [36]

Whatever the term might mean, it surely can’t take into account several aspects of My Health Record. Would the military countenance millions of potentially insecure end points? Who says every doctor observes good security practices? Or that all hospitals have state-of-the-art antivirus software? Or that Jane Public knows how to keep log-in credentials safe?

“Nigel Phair, Director of the UNSW’s Canberra Cyber told nine.com.au while the site itself might have the latest security, it’s the people using it who could be the problem.”

“The real issues come around things like, I go to my GP and there might be two receptionists and five or six doctors. The front desk isn’t always occupied – there might be a post-it note on the screen with log in details which I can look at,” he said.

“Hospitals is the next thing, particularly when you start looking a mobile devices, and lastly phishing where criminals spoof the website and get people to divulge their username and passwords.

“There’s nothing more sensitive in life than your health records.”

“You don’t want them falling into criminals’ hands but you also don’t want them to fall into the hands of insurance companies.” [6]

“The best security is to prevent it from accumulating information on you in the first place. Then there’s none to steal or to misuse. Opting out of My Health Record is the only sensible option.” [7] (Bernard Keene, Crikey)

Privacy

Controls

These are dubious at best. They are hard to set, especially if you are not familiar with technology. You can only put privacy controls on a document once it has been uploaded, so there may well be a gap between the document being uploaded and you discovering it and putting controls on it.

The controls cannot be applied to all documents. If your GP has uploaded a Shared Health Summary or you’ve filled in a Personal Health Summary, you cannot limit access to them. The government hides this gem in the Privacy Policy of its website

As soon as your data is downloaded to other systems, any privacy controls you may have set in My Health Record are no longer in force.

Access by the Government

And then there is the government’s access to your health data: “there are a wide range of circumstances in which any privacy controls you set can be overridden without your consent, meaning that data can be disclosed without your knowledge. These include making information available to third parties for purposes that are unrelated to healthcare — such as law enforcement.”[8]

Information shared without your consent

The move to opt-out has meant that the government no longer has to get your informed consent to register you and to acquire and share your health data.

“(Consumers of Mental Health WA) has found My Health Record may not benefit everyone equally. There are a number of unresolved issues that raise concerns for people’s rights and may cause unintended consequences including people’s information being shared without their knowledge and consent.” [9]

The legal basis of My Health Record

“It may be surprising to some that, in Australia at least, there is no fundamental right to privacy. There are laws that protect aspects of your confidential information, including the Privacy Act 1988 (Cth) and associated Privacy Principles, that impose sanctions on those who fail to properly deal with private data. Common law remedies also exist in theory, however there is no readily accessible statutory cause of action that allows a privacy breach victim to claim their emotional distress and other damages. This gap in our law was the subject of a 2014 Australian Law Reform Commission Report, to which the Australian government has never formally responded.

Instead, since late February 2018 we now have a mandatory requirement for various entities including government and larger businesses, to report breaches of privacy. If your data is compromised (accessed by those who are not authorised), you must be notified and suggestions offered on ways to mitigate any impact. If your credit card details are leaked, for example, a suggestion might be to cancel those cards to prevent unauthorised use.

Under this new law, you will know exactly when your privacy was compromised. Cold comfort perhaps, however the intent is that a process of reporting will ultimately lead to better protections.

Of course, not all private information is the same. It is hard to imagine what should be done to mitigate the impact of a breach of personal medical information. Once disclosed, such information cannot simply be cancelled – it remains true, sensitive and open to abuse no matter what is done in response.

…

One thing is clear: the law is not able to physically protect your private information. It can only respond to breaches that have already occurred. Allowing your private information to exist outside of your direct personal control then becomes a question of risk versus benefit.”

For more information about the legal issues of My Health Record see here: The law and My Health Record

Links to resources that you may use to decide if you wish to opt-out

The government is only giving you one side of My Health Record – what they think the benefits are. Have a look at what they tell you about the costs, risks and potential disadvantages to minority communities in Australia. Can you find anything? No. There isn’t anything.

To help you make an informed choice, here is more information to balance out the government’s spin.

The Chaser Team deserve their own section:

The Betoota Advocate

Malcolm Turnbull Spends His Morning Trying To Opt Out Of MyHealthRecord Clancy Overell

The Shovel

Health Minister Assures Local Man That The My Health Record System Is Secure, And Wishes Him Well For His Upcoming Genital Herpes Treatment

And we can’t forget the odd political cartoon

Opt out! Cassandra the Information Technology Wobbegong on My Health Record

Hacked – Matt Golding

Deep breathe, nothing to worry about, just a little security breach Matt Golding

What are they Laughing at? Your Health Record Spectator Australia

Youtube

Shaun Micallef’s Mad as Hell on My Health Record

Honest Government Ad | My Police State! TheJuiceMedia

And from an earlier time, although the parallels are spooky, even the health ministers have the same name (Hunt) :
Tim Kelsey discovers that care.data is in trouble

Audio

Government accused of not doing enough to persuade people to remain on My Health Report
ABC Radio National Breakfast
Wednesday 18 July 2018 6:51AM

Government accused of encouraging doctors to “sell” confidential patient data
By George Roberts on ABC PM
Monday 16 Jul 2018, 5:02pm

My Health Record – risks and tips
Legal Aid NSW. Law for Community Workers on the go
20 December 2018
“In this podcast we talk with lawyers from law firm Dentons and the Inner City Legal Centre (ICLC)—who together operate the Trans and Gender Diverse Legal Service and help clients navigate the My Health Record system.“

GPs raise fresh concerns about the legal risks of My Health Record
Dr Kerryn Phelps Interview ABC RN Drive
Monday 28 January 2019 6:15PM

Other Resources

For the best source of current, well informed opinions and information on Digital Health and My Health Record in particular, go to the blog of Dr David More: Australian Health Information Technology. The comments are particularly useful as they give a voice to people with deep knowledge but who are not in a position to express their opinions publicly.

Contacts

Dr Bernard Robertson-Dunn
Chair, Health Committee
Australian Privacy Foundation
Bernard.Robertson-Dunn@privacy.org.au
Mobile 0411 157 113

What we and others think of My Health Record

Latest:

The Senate Inquiry

Comments on the Recommendations:

The Senate Inquiry (written prior to the report being issued)

Comments and Information on My Health Record

Recommendations to the government regarding a move to opt-out

How to opt-out of My Health Record.

Why you might consider opting out:

Alternatives to Opting Out

Security

Privacy

Controls

Access by the Government

Information shared without your consent

The legal basis of My Health Record

Links to resources that you may use to decide if you wish to opt-out

Australian Privacy Foundation Material

Coverage of the Senate Inquiry

Comments on the Report from the Senate Inquiry

Other Media

The Parliamentary Paper

Alternative Solutions/Approaches to My Health Record

Point of care, Clinical Decision Support rather than Health Records

Other issues about Health Data/Medical and about Trust

The Chaser Team deserve their own section:

The Betoota Advocate

The Shovel

And we can’t forget the odd political cartoon

Youtube

Audio

Other Resources

Contacts