Labor Health Spokesman On The myHR Last Night. Have Some Worries They Do!

Here you are:

SPEECH

Date  Tuesday, 14 August 2018                                     Source House

Page 103                                                                                    Proof Yes

Questioner                                                                                 Responder

Speaker  King, Catherine, MP                                  Question No.

Ms CATHERINE KING (Ballarat) (18:49): This is a government that is always there for the shiny, exciting headline-grabbing announcements when it comes to digital projects but that goes missing when it comes to   the implementation. After those announcements, it goes missing. We've seen that with the National Disability Insurance Scheme and the way in which it has completely mucked up the implementation. We've seen it with the census fail and we've seen it with the National Broadband Network. This is a government that cannot deliver services and cannot deliver digital projects.

Two years go, this government announced it was going to 'rescue' Labor's electronic health record system. This is, of course, after coming to government and doing nothing at all for 12 months. Suddenly it had to rescue a system that was on a trajectory of actually getting more and more people signed up. Never mind that Labor's opt- in scheme didn't need rescuing. It was a scheme that already had a million people signed up and was growing steadily as public awareness of its benefits spread. Nonetheless, they decided to go to an opt-out model. The opt- in model relied on the informed consent of patients actively choosing to take part; the opt-out model relies on presumed consent. It is a fundamental shift in thinking about the electronic health record.

Despite this, the government somehow didn't go back and tighten the legislation or look at whether the enabling framework legislation that underpinned our personally controlled health record was suitable. So right from the start they dropped the ball on implementation. They did nothing for ages, they then axed the Medicare Locals that were charged with getting informed consent for the personally controlled electronic health records and then they decided that they would trial opt-out.

After the announcement of the trials we didn't hear much about it—although there were some problems with the opt-out trial sites—until a few months ago when the government announced that the three-month opt-out period would start. From the beginning, we were pretty wary. We recognise that, if implemented by a competent government, e-health could deliver tangible healthcare improvements and save the health system up to $7 billion a year through fewer diagnosis, treatment and prescription errors. That's the very reason that we began delivering this important reform when we were in government—building that architecture. But given that this is the same mob that, as I said, gave us census fail, stuffed up robo-debt, botched the NBN and the NDIS, and allowed Australians' Medicare data to be sold on the dark web, we had real concerns about their ability to pull this off, Unfortunately, our worst fears have been realised.

The Liberal government made the decision to transition to an opt-out system, but made no real effort to explain this fundamental change to the community and to bring the community with them. They made no effort to reassure people that their privacy would be protected and that their data would remain secure. In short, they didn't seek to bring the public along with them. If anything, they sought to conceal these changes from the Australian public. There was no public information campaign—we were assured by the Australian Digital Health Agency that there would be. There was no TV advertising and no leadership from the Minister for Health. They gave every impression that they were trying to sneak through the opt-out process so that Australians wouldn't even notice that it was happening and so wouldn't exercise their right to opt out.

It was this approach that of course fuelled the firestorm of public suspicion and distrust that was to follow. The first month of the opt-out period, frankly, has been an absolute disaster. The media, doctors, unions, privacy advocates and opposition have all exposed a string of privacy and security concerns that the government seemed not to have even considered, nor could it actually explain them. Two weeks into the fiasco, the minister announced some welcome changes: amendments to require law enforcement agencies to get a warrant or a court order to access records, an extension to the opt-out period and the ability to delete permanently unwanted records. The minister also finally conceded the need for a comprehensive public information campaign. We're still waiting on the details of what this will look like and whether it will be adequate. We're also deeply sceptical that any truly comprehensive campaign can be produced and rolled out in the three months between now and the end of the extended opt-out period.

But whatever the case, these changes do not go far enough to address the concerns swirling around the Australian community. That's why Labor has maintained its call for the rollout of the scheme to be suspended until these issues can be addressed. And that's why Labor has today called for a comprehensive Senate inquiry into the scheme, not just into the government's proposed legislative amendments but into the whole system underpinning the My Health Record system. We want this inquiry to look at all of the legislation, regulations and rules     that underpin the scheme—a complete stocktake of the My Health Record system. There are some serious unaddressed issues involving domestic violence and workers compensation, and the potential that commercial actors like health insurers will get access.

Family law experts have warned that the system could become a new battleground in disputes between warring exes and risk the safety of women fleeing abusive former partners. They point to a loophole that allows a parent who does not have primary custody to create a My Health Record on their child's behalf without the knowledge or consent of the former partner. An abusive ex-partner could then gain access to details, including the location of medical practitioners and pharmacies attended by the child with their primary caregiver, putting people at risk.

There is also uncertainty about the potential for employers to gain access to the private health data of workers. Unions are urging tens of thousands of their members to opt out, because they fear that under the new system employer doctors used for pre-employment health checks for insurance purposes could get access to and pass on a worker's entire medical history.

Labor wants this reform to succeed, but we can well understand why unions are urging their members to opt out. With this kind of uncertainty swirling around, why wouldn't they? This is what the government has done. There was a 10-year pathway to an excellent healthcare reform, and because of the government's failure to address some of these fundamental questions we've got unions telling people to opt out, doctors telling people to opt out, GPs saying they have opted out and specialists saying the same thing. Even politicians: there are many members of this place who have told me that they have opted out. This is not the sort of system that gives us and the public a great deal of confidence that the government has got it right. The government claims none of these are actually issues—forgive my scepticism. It also said there was no issue around law enforcement access but was then forced into a humiliating backdown when it agreed to amend the legislation.

Let's have a proper look at these issues. Let's consider some other proposals, too. Should there be a second factor for authentication beyond username and password for healthcare professionals? Should there be better default access restrictions so that healthcare professionals other than your immediate treating doctor don't see things like your STI history, for example? Should we make it opt in for your data to be used for research purposes or opt in for each individual piece of health data to be uploaded? Should we revoke third-party apps' access to the data?

We're deeply concerned also about the secondary use of data. Under the current framework, My Health Record data cannot be used for solely commercial and non-health related purposes such as direct marketing to consumers. But what's to stop a future government, particularly one that has control of the Senate, changing that framework to give insurance companies, for example, access to that data? We know the big health insurers want access. They're very keen for that. Labor wants to make sure that that does not happen—no matter what—but we don't trust this government to honour its assurances. We want an ironclad legislated guarantee that this won't happen.

Given all of this continued uncertainty, we urge the Greens and crossbenchers to join with us in the Senate     to make this inquiry a reality. We know that the legislation the government is proposing will go to a Senate inquiry. We understand that is going to be the case, and it is certainly what we would be recommending, but it needs a much broader inquiry where people who have expertise in cybersecurity and in privacy law can actually have these matters heard. Nothing less than a comprehensive inquiry will satisfy concerned stakeholders and a concerned public.

This is a system that is an important health reform, but the government has absolutely jeopardised the reform because of its failure to get the implementation right. It has underestimated people's concerns about their privacy and people's concern and understanding of what is now happening with their data. We are in a different world from what we were in back 2012 when we had an opt-in, informed-consent system. The government has failed with My Health Record. We need to look at this further.

This has all become pretty willing and Labor seems to want to take a close look!

David.

A Few Thoughts On The Proposed Senate Inquiry

Having reflected on all this there are some points worth making.

First - after the ALP Release and Minister Hunt's response it is clear we now have moved from bi-partisanship to political contest.

Second it would be a more than considerable surprise if Labor does not form the next Federal Government - given the polls over the last 2.5 years.

Third if this occurs then the myHR will become Labor's problem and if it does not then the Coalition will face a contested environment on the future of the myHR.

In both circumstances we need to have the opt-out process paused while a full, all options on the table, Review is conducted . The artificial objective of finishing the inquiry before the opt-out period has not been properly thought through and the opt-out period should re-commence after the Inquiry has reported and been properly publicised.

Since this would almost certainly go very close to the next election (allowing for the silly season over Christmas) and the care-taker period, it would seem sensible to simply pause until the election outcome is known and whatever is required is begun by a new, re-elected Government.

We need a considered outcome to all this - not haste and error!

David.

Commentators and Journalists Weigh In On The MyHR Debate. Lots Of Interesting Perspectives - 4.

Note: I have excluded any commentary taking significant  funding from the Agency or the Department of Health on all this to avoid what amounts to paid propaganda. (e.g. CHF, RACGP, AMA, National Rural Health Alliance etc. where they were simply putting the ADHA line – viz. that the myHR is a wonderfully useful clinical development that will save huge numbers of lives at no risk to anyone – which is plainly untrue)

-----

http://www.abc.net.au/radionational/programs/healthreport/how-are-gps-using-my-health-record/10077244

How are GPs using My Health Record?

• Listen now (Link will open in new window)
• Download audio

Monday 6 August 2018 5:52PM (view full episode)

Dr Ewen McPhee is a rural general practitioner who says My Health Record is invaluable to his practice.

He says it helps to provide continuity of care to people moving across the region who see multiple practitioners and don't necessarily keep good records.

Dr McPhee says there are legitimate concerns around privacy issues, especially for minors and people with dementia, and argues there's a need for further careful thought around how those areas are addressed.

Guest:

Dr Ewen McPhee

Rural General Practitioner

-----

https://www.smh.com.au/business/workplace/unions-urge-members-to-opt-out-of-myhealth-record-20180806-p4zvr6.html

Unions urge members to opt out of MyHealth Record

By Anna Patty

10 August 2018 — 12:10am

Uncertainty over the potential for employers to gain access to the private health data of workers from doctors has sparked fresh calls for a boycott of the new MyHealth Record system and warnings that current laws are unclear.

Unions have urged tens of thousands of members to opt out of the controversial system arguing that employer doctors - used for pre-employment health checks or insurance purposes - could get access to and pass on a worker's entire medical history under the new system.

The claim sparked a strong denial from the government and the My Health Record System operator, but legal experts said the unions could have a case because the laws governing access were spread across several pieces of legislation and the rules were unclear.

Tom Ballantyne, from Maurice Blackburn Lawyers, said doctors who examine employees would have access to their medical health records unless the worker changed their privacy settings.

-----

https://www.sydneycriminallawyers.com.au/blog/my-health-record-a-further-erosion-of-civil-liberties/

My Health Record: A Further Erosion of Civil Liberties

By Paul Gregoire | 09/08/2018 | No Comments Print

The Turnbull government oversaw the 2015 implementation of a system that allows 21 government agencies warrantless access to all citizens’ metadata, while last year, it announced a national facial recognition system that will allow all citizens’ ID photos to be matched with CCTV footage images.

The government is currently in the process of rolling out a national health data scheme that will automatically link all citizens’ private health information – which will potentially include genomic data – to a centralised system unless individuals opt-out by 15 October.

My Health Record is being spruiked as a system that will allow doctors convenient access to a patient’s medical history. However, privacy advocates and health professionals are warning of the security and privacy threats posed by the scheme, which allows for the secondary use of data.

-----

https://www.australiandoctor.com.au/news/ama-monumentally-wrong-back-my-health-record-professor-kerryn-phelps

AMA 'monumentally' wrong to back My Health Record: Professor Kerryn Phelps

The AMA and RACGP should have been less enthusiastic before offering their 'breathless support', she says

Antony Scholefield

9th August 2018

The AMA and RACGP’s public support for My Health Record has been a monumentally bad idea, says former AMA president Dr Kerryn Phelps.

Her comments follow Minister for Health Greg Hunt’s promise to redraft the legislation so that clinical records on the system are covered by the same legal protections as those held by doctors.

Under the current My Health Record Act (2012), the Australian Digital Health Agency can hand over a patient’s medical records to law enforcers and government agencies without a warrant, providing it “reasonably believes” the request is necessary to prevent a law being breached.

-----

https://ama.com.au/ausmed/bartone-ultimatum-fix-my-health-record

The Bartone Ultimatum: – “Fix The My Health Record”

09 Aug 2018

---

During a private twilight meeting in Melbourne three weeks ago, AMA President, Dr Tony Bartone, put a strong demand directly to Health Minister Greg Hunt – fix the privacy provisions of the legislation or the My Health Record (MyHR) will remain in limbo for years to come.

Dr Bartone had made public his intentions a week earlier at the National Press Club in Canberra when he declared to journalists that he would do ‘whatever it takes’ to force the Government to take action to make the privacy protections of health information as watertight as possible in the digital health age.

The new AMA President stayed true to his word.

With the blessing and support of the AMA Federal Council, Dr Bartone, a Melbourne GP, took a four-point shopping list to the Minister – amend the Act to ensure health data is not disclosed without a warrant or court order; ensure that people who opt-out do not end up with a permanent MyHR; run a public information campaign; and extend the opt-out period.

-----

https://www.technologydecisions.com.au/content/information-technology-professionals-association/article/my-health-record-a-flawed-initiative-83304796

My Health Record — a flawed initiative

Information Technology Professionals Association (ITPA)

By Robert Hudson, President, ITPA
Wednesday, 08 August, 2018

One of the biggest IT issues ongoing at present is the Australian Government’s My Health Record project. It was designed as an opt-in service, where you would have to explicitly provide a healthcare provider with authority to create a record on your behalf. The primary benefit of the service was that a ‘single source of truth’ copy of your medical records (or a summary of them) would be available to any health provider nationally. So if you were away from home within Australia and required treatment, your records would be available to medical professionals, who would be able to learn your medical history, allergies etc, with the idea being that you would receive better and more appropriate medical care as a result.

Unfortunately, the benefits of the service were not well sold to the public, and the percentage of people who had opted-in to the service was very low — so low as to make it largely useless. (Oddly, the current My Health Record website claims that 5.9 million Australians already have a record — so the take-up is already at approximately 25% of the Australian population.)

The current federal LNP government decided to change this, and passed legislation that meant that unless people opted-out of the service within a very small window of time, they would have a record created by default, and once that record was created, there was no way to delete it except by dying (records being kept for 30 years after a recorded date of death, or 130 years from birth if a date of death was not formally established and entered into the record).

-----

https://theconversation.com/using-my-health-record-data-for-research-could-save-lives-but-we-must-ensure-its-ethical-100757

Using My Health Record data for research could save lives, but we must ensure it’s ethical

August 8, 2018 1.27pm AEST

David Hunter  Associate Professor of Medical Ethics, Flinders University

There has been considerable debate about the merits and risks of the My Health Record (MHR) scheme – ranging from the deep inefficiencies in the current system, to privacy issues and control of data.

There has been less discussion of some down-the-track intended uses of this data for secondary purposes – such as for research.

A rich dataset of health information could be used in studies that generate enormous benefits to society, but medical research is carried out under strict ethical guidelines.

Unfortunately, a consent process where people are required to opt out rather than opt in doesn’t meet ethical standards for research.

-----

https://www.kidspot.com.au/news/my-health-record-everything-you-need-to-know-about-the-central-database/news-story/75b24ca5075beaaba4b98a9b13a5c63d

My Health Record: everything you need to know about the central database

Pilar Mitchell | August 08, 2018

Privacy concerns have some people opting out, but are do the benefits outweigh the

The deadline to opt out of My Health Record (MHR) is quickly approaching. Anyone who doesn’t choose to opt out by October 15, 2018 will have a digital copy of their medical records made and stored in a central database.

It will hold things like medical history, mental health plans, prescribed medications and can be shared across GPs and other health care providers.

There are good arguments for centralising this information, especially for people with ongoing health issues. But there are also legitimate concerns about privacy and security. Should you and your family opt out or join the nearly six million Australians already in the database?

-----

https://www.lexology.com/library/detail.aspx?g=77b00f2d-d5d5-4112-98a0-568a5711239b

Cyberattacks and the Value of Medical Data Blog

Knobbe Martens

On July 20, 2018, SingHealth, a Singapore healthcare institution consisting of four public hospitals, five national specialty centers and a network of nine polyclinics, reported that it had been the target of a cyberattack resulting in the information of around 1.5 million individuals being compromised.

This is not an isolated incident as statistics compiled from the U.S. Department of Health and Human Services (HHS) indicate that more breaches involving healthcare data were reported in 2017 than any other year since records first started being published. In Experian’s 2018 Data Breach Industry Forecast, Experian noted that from January through June of 2017, 233 healthcare data breach incidents were reported to HHS, the media or state attorney generals. For the 193 attacks for which there are numbers, 3,159,236 patient records were affected. In a 2016 Data Breach Industry Forecast, Experian predicted that healthcare companies remain one of the most targeted sectors by attackers, driven by the high value that compromised data can command on the black market, along with the continued digitization and sharing of medical records.

-----

https://www.smh.com.au/national/the-troubling-implications-of-my-health-record-s-genetic-info-plans-20180807-p4zvz1.html

The troubling implications of My Health Record's genetic info plans

By Wendy Bonython

8 August 2018 — 12:00am

It is not surprising there are plans to include genetic information, in the form of genomic pathology reports, in My Health records.

Precision medicine – using insights obtained from genomics and other "big data" analysis – enables treatment and prevention strategies to be customised, potentially revolutionising healthcare. The government has committed financially to precision medicine. Genomic pathology testing is an increasingly important tool in the diagnostic arsenal. The inclusion of genomic testing results in the My Health record is consistent with inclusion of other pathology test results, increasing the amount of clinically useful information available to healthcare providers in My Health, but also contributing to a valuable research dataset.

But genetic pathology test results are fundamentally different from other pathology results. The shared nature of genetic material – received by individuals, along with their siblings, from their parents, and in turn transmitted to their children – means that information about the genetics of a patient necessarily reveals, or allows educated inferences about, the genetics of other people not the subject of the My Health Record.

-----

https://www.theage.com.au/national/making-an-extra-effort-to-improve-my-health-is-worth-pursuing-20180807-p4zw2h.html

Making an extra effort to improve My Health is worth pursuing

7 August 2018 — 7:18pm

When Canberra man Matthew Toohey, who has had three rounds of brain surgery, told reporter Andrew Brown that he has opted out of the federal government's My Health Record scheme, an alarm should have sounded somewhere in the nation's capital.

The benefits that are supposed to flow from the scheme – which has run for six years without any significant security breach – are greatest for those with serious health problems and those from sections of society that struggle to engage with health services. As Adrian Pokorny, a doctor in the Northern Territory, pointed out, for many of these people having to opt in simply adds one more administrative barrier to much-needed care.

Mr Toohey did not question any of this. "Not enough has been done to assure us that the data will be secure and won't be used for purposes other than of health professionals," he said. "The concept is good, but the execution of it is poor."

-----

https://www.theaustralian.com.au/business/technology/notforprofit-sector-can-lead-on-data-privacy/news-story/66ddc6c466ddeb752f5f1dbffd40e608

Not-for-profit sector can lead on data privacy

Supratim Adhikari

• 12:00AM August 7, 2018

The not-for-profit sector has an opportunity to lead from the front when it comes to data privacy, as public awareness of the issue takes centre stage in Australia, according to the latest analysis into data governance from Perpetual and Stanford University.

According to Lucy Bernholz, senior research scholar and director of the digital civil society lab at Stanford, Australians are finally starting to take the use of their data seriously. “Public attitude and awareness on this issue has changed dramatically, especially compared to three years ago when the government announced the census was going to be put online.

“But you look at the conversation around My Health Record and the government has had to change the law and it could very well be an election issue.”

-----

https://thenewdaily.com.au/money/consumer/2018/08/06/my-health-record-dna-privacy/

7:29pm, Aug 6, 2018 Updated: 8:03pm, Aug 6

My Health Record prompts concerns over storage of DNA data

Alana Mitchelson Consumer Affairs Journalist @AlanaMitchelson

Your risk of developing a certain type of cancer and susceptibility to particular mental health problems could be forever stored in the My Health Record online database.

This comes after a Fairfax report revealed that Australian genetic information company Genome.One is able to upload DNA data to My Health Record, which The New Daily later confirmed with federal Health Minister Greg Hunt’s office.

It has raised questions as to whether the thousands of Australian consumers who have purchased a home DNA kit could effectively upload their test results to My Health Record.

Biotechnology expert Dr Wendy Bonython told The New Daily it won’t be long before other companies also look at uploading data to My Health.

-----

https://www.theaustralian.com.au/business/technology/business-playing-russian-roulette-with-cybersecurity/news-story/4ab82a598e38053aabe7be9de7fe504d

Business playing Russian roulette with cybersecurity

• By Michael Connory
• 12:00AM August 7, 2018

Russian roulette is an interesting game of dare, jockeying against chance.

One bullet in a six-barrel chamber hoping the squeeze of the trigger isn’t a fatal shot.

And that’s exactly what Australian businesses are playing with our data.

The release of the OAIC notifiable data breaches second quarterly report last week revealed disturbing trends around the security of our information and what value is placed on its protection. None, it seems!

As harsh a comment as it may be, valuing protection can only ever be measured by commitment to invest in initiatives to ensure its safeguard. Information into our lives is now a biddable auction given the failure by businesses to secure our data.

-----

http://www.aei.org/publication/data-privacy-debacle-down-under-is-australias-my-health-record-doomed/

1. Bronwyn Howell

August 6, 2018 6:00 am | AEIdeas

Data privacy debacle down under: Is Australia’s My Health Record doomed?

Technology and Innovation

Australia — the “lucky country” whose foray into building a government-funded nationwide fiber network has resulted in cost blowouts, uptake disappointments, regulatory wrinkles, and system redesigns — may be on the cusp of yet another government-funded, centrally planned, nationwide-coverage information and communications technology debacle. In the spotlight this time is the A$4 billion database of citizens’ health information, dubbed My Health Record.

The viability of the nationwide system is at stake. An unexpectedly large numbers of citizens have opted out of participating in My Health Record, as sufficient concerns have been raised about the security and privacy of the sensitive information the database holds. When the three-month opt-out window opened last month, the system crashed under the sheer weight of applications for the “right to be forgotten” by the giant government health data repository. The 1.9 percent trial defection rate indicated 500,000 Australians in total would opt out. Either they all chose to do so in the first few days, or the developers have vastly underestimated the extent to which citizens do not want to participate in the government-mandated system. The latter may well be a function of the high volume of bad publicity recently — with citizens likely getting the message “if in doubt, opt out.”

-----

https://www.racgp.org.au/newsGP/Professional/Expert-pours-cold-water-on-My-Health-Record-genomi

Expert pours cold water on My Health Record genomics fears

Doug Hendrie 6/08/2018 3:28:14 PM

An RACGP e-health expert has poured cold water on fears that genomic data will not be safe if uploaded to My Health Record.

Genomic medicine is in the news.

Chair of the RACGP Expert Committee – eHealth and Practice Services (REC–eHPS) Dr Nathan Pinskier believes recent reports that genomic data would be uploaded to the government’s health data repository should not trigger concerns.

‘[Genomic data] is the same as other pathology tests. It goes to My Health Record based on consent. They’re not uploading the DNA, but just a summary of findings,’ Dr Pinskier said.

‘Consumers have control. They can upload or not upload – it’s up to them. If they want to remove the data afterwards, they can.

-----

https://socialfutures.org.au/acoss-welcomes-commitment-to-protect-privacy-of-my-health-record/

ACOSS Welcomes Commitment to Protect Privacy of My Health Record

6, Aug 2018

ACOSS welcomes the Federal Government’s commitment to make changes to the My Health Records legislation to protect the privacy of people with a My Health Record.

ACOSS believes that My Health Record has the potential to deliver better coordinated care and allow people more control over their health information. However, the current My Health Records Act 2012 fails to adequately protect the use of a person’s health information and is out of step with community expectations of privacy.

ACOSS CEO Dr Cassandra Goldie said: “The Minister’s commitment to make changes to the My Health Records Act to protect the privacy of people with a My Health Record is welcome news.

-----

https://www.afr.com/technology/web/security/security-fears-are-still-too-high-so-im-opting-out-of-my-health-record-20180802-h13hh9

• Updated Aug 6 2018 at 11:00 AM

Security fears are still too high, so I'm opting out of My Health Record

by Carlo Minassian

I've opted out of My Health Record and I'd urge anyone concerned about their privacy and security to do the same.

While the recent move to enshrine in legislation the need for a court order before releasing records to police or government agencies is positive for privacy, criminals don't care for court orders. To put it simply, not opting out of My Health Record before the October 15 deadline will expose your private health data to being hacked or compromised.

While ample assurances have been given by Health Minister Greg Hunt, much of these are based on claims of apparently infallible, "military-grade security" protecting our data.

My Health Record's biggest benefit is the greater accessibility it offers to Australians and their health care professionals. Ironically, it is this greater accessibility that makes the system so vulnerable.

-----

https://privacy.org.au/privacy-trust-and-my-health-record/

Privacy, Trust and My Health Record, or The Spy in The Consulting Room

This was first published in Privacy Unbound, the Journal of the International Association of Privacy Professionals ANZ (iappANZ) Edition no. 85, August 2018

1    Introduction

Dr Bernard Robertson-Dunn is an electronic and automation engineer, has a PhD in modelling the electrical activity in the human small intestine and has had over forty years modelling, architecting and designing large scale information systems, mostly in government environments.

These include the Departments of Health, Finance, Immigration, Defence Bernard has been following the progress of, and has contributed to, the debate on the My Health Record for over ten years. He has no association or affiliation with any vendor or government organisation. Bernard is chair of the Health Committee of the Australian Privacy Foundation.

-----

https://www.smh.com.au/technology/we-need-new-ways-to-protect-people-in-the-digital-era-20180805-p4zvlz.html

We need new ways to protect people in the digital era

By Dhananjayan Sriskandarajah

6 August 2018 — 12:18am

In an age of ever-advancing, ever-encroaching technology, how do we ensure that our basic rights are protected? New technologies and the speed of progress these days may have many positive impacts on our lives but the fact that they are poorly regulated and hardly understood by the public, poses serious threats.

In Australia, the importance and complexity of this issue is best demonstrated by the growing controversy surrounding the My Health Record system. Many Australians are sceptical of joining for fear that sensitive personal information could fall into the wrong hands and exploited. Hundreds of thousands have already opted out, in defence of their right to privacy protection. And despite government assurances, it’s clear more is required to address an increasingly concerned public’s need for cybersecurity.

So Health Minister Greg Hunt has announced changes to the legislation that will allow people to withdraw from My Health Record after the opt-out period ends and have their electronic health record deleted. Originally, all records were to be kept for up to 130 years, even after a patient requests they be deleted. Also, the authorities now cannot access information against a patient’s wish without a court order – a growing concern.

-----

http://thewire.org.au/story/possible-delete-information-health-record/

Is it possible to delete information on My Health Record?

Experts say it is challenging to permanently delete information from a digital system. Image by Pixabay

Minister Greg Hunt stepped up and spoke about the My Health Record controversy, saying Australians can opt out and ask for their information to be deleted permanently. However, experts in the topic are concerned about his statements because deleting information from a digital system is a challenge.

Download Audio

-----

https://www.doctorportal.com.au/mjainsight/2018/30/myhealthrecord-why-this-gp-opted-in/

MyHealthRecord: Why this GP opted in

Authored by Linda Mann

Issue 30 / 6 August 2018

I JOINED what was then the Patient Controlled Electronic Health Record, now known as My Health Record (MyHR), as soon as it was available. I won’t be opting out.

In addition to working in urban Sydney, I have worked in the Northern Territory since 2006, using the statewide (albeit very old) medical record, which has been instrumental in permitting continuity of care for patients who move around the NT. Of course, if they have care outside the NT, their treatment is blind to me.

I have been really impressed with the value of knowing who has had treatment already for a condition I thought I was seeing for the first time, of knowing what medications the patient is prescribed, in addition to the ones I thought I knew, and of having specialist access more easily.

-----

https://northcoastvoices.blogspot.com/2018/08/tell-me-again-why-turnbull-government.html

Sunday, 5 August 2018

Tell me again why the Turnbull Government is insisting My Health Record will become mandatory by the end of October 2018?

It is not just ordinary health care consumers who have concerns about the My Health Record database, system design, privacy issues and ethical considerations.

It is not just the Turnbull Government which has not sufficiently prepared public and private health care organisations for the nationwide rollout of mass personal and health information collection - the organisations themselves are not ready.

-----

https://www.smh.com.au/healthcare/my-health-record-can-store-genomic-data-but-critics-say-it-s-not-ready-20180801-p4zuxz.html

My Health Record can store genomic data but critics say it's not ready

Esther Han   6 August 2018 — 12:01am

The federal government's My Health Record system is capable of storing genomic information, such as a person's genetic risk of developing cancer, which could turbocharge medical research but has intensified privacy and security fears.

Fairfax Media can reveal Sydney-based whole genome sequencing company Genome.One developed “necessary infrastructure” in order to upload highly sensitive genomic information onto My Health Records.

The Australian Digital Health Agency (ADHA), which for weeks has been deflecting privacy and data security concerns, handed the for-profit company $40,000 in September last year to support the development of the software.

-----

Comments welcome!

David.

Labor Seeks Senate Enquiry On The myHR

Here is the release:

Here is the text in easier to read format:

CATHERINE KING MP
SHADOW MINISTER FOR HEALTH AND MEDICARE
MEMBER FOR BALLARAT

JENNY MCALLISTER
SENATOR FOR NEW SOUTH WALES
CHAIR, SENATE FINANCE AND PUBLIC ADMINISTRATION REFERENCES COMMITTEE
 

 

LABOR TO LEAD SENATE INQUIRY INTO MY HEALTH RECORD

Labor will lead a comprehensive Senate inquiry into Malcolm Turnbull’s My Health Record fiasco amid ongoing privacy and security concerns.

We remain deeply concerned that the Government’s bungled rollout of the My Health Record opt-out period has severely undermined public trust in this important reform.

Labor has long supported an electronic health record system. We believe it has the capacity to revolutionise health care delivery, but we also recognise it needs a high degree of public support in order to be successful.

While the Government has agreed to a number of changes demanded by Labor and doctors’ groups, including an extension of the opt-out period and a new public information campaign, more needs to be done.

We will this week ask the crossbench to support a reference to the Senate Finance and Public Administration References Committee, which also inquired into the census failure and the sale of Medicare numbers on the darkweb.

The inquiry will review all the laws, regulations and rules that underpin the My Health Record.

It will examine the Government’s decision to shift from an opt-in system to an opt-out system and whether it adequately prepared for this fundamental change from Labor’s system.

It will examine a range of privacy and security concerns, including the adequacy of the system’s log-in procedures and default settings. It will also consider issues raised in the public domain around domestic violence and workers’ compensation.

The inquiry will look at the adequacy of the Government’s public information campaign, and the potential that commercial interests – including health insurers – could be given access to My Health data.

The committee will be asked to report before the end of the opt-out period in mid-November.

Labor remains of the view the Government should suspend the My Health Record rollout until this mess can be cleaned up.

The Government has botched the NDIS, the NBN, the census, robo-debt and now the My Health Record. This is a Government that is there for the announcement but goes missing when it’s time to implement.

TUESDAY, 14 AUGUST 2018

I hope the Senate looks at all aspects of the myHR. There is a real case for scrapping the myHR and taking a totally new approach.

If the Senate does not start from the position that all options for the myHR's future are on the table it will be a profoundly useless inquiry.  The risk is that it will wind up being a politically driven inquiry. Given Labor is pretty likely to be in Government after the next election then myHR will become their problem - so they better think carefully how they are going to proceed. They may be at risk of creating a large millstone around their neck!


David.