Showing posts with label data retention. Show all posts
Showing posts with label data retention. Show all posts

Wednesday, 22 August 2018

And the warnings continue about My Health Record.....


Financial Review, 13 August 2018:

One of the world's leading experts in cyber security policy has warned the manipulation of health data is one of his biggest concerns facing society, as debate continues to rage about the long-term viability of the government's controversial opt-out My Health Record.

Former Pentagon chief strategy officer for cyber policy and newly appointed head of cyber security strategy for data centre security company Illumio, Jonathan Reiber, told The Australian Financial Review the health data of MPs and business leaders would be of particular interest to cyber criminals.

"If I'm a malicious actor wanting to cause discontent, I would be interested in that," he said.

"If you get access to the health information of key leaders, you can understand what they like, who they are and what their problems are. [Cyber criminals] would want to look at a segment of 50 to 100 key leaders in the country, figure out data for intelligence purposes and then manipulate the data for the negative."

Earlier this month Health Minister Greg Hunt announced that the government would redraft the legislation surrounding My Health Record to restrict police access and allow records to be deleted permanently. 

He had previously copped criticism for saying the digital health database had "military-grade security", despite not having two-factor authentication protocols.


The Sydney Morning Herald, 14 August 2018:

Labor's health spokeswoman Catherine King said the government's decision to switch to an opt-out model, which Labor originally supported, gave rise to "a whole range of significant privacy and security issues that we don't think were thought of in the original enabling legislation".

"Are they then able to opt-out when they become adults? What's happening in terms of survivors of domestic violence and the capacity through the creation of a record by an abusing partner, of a record for their children or agreement to a record for their children, what security is in place to ensure that they are not traced?"

Legal experts have warned that the system provides a loophole for a violent person to create a record for their child without their ex-partner's consent, potentially allowing them to track down their estranged family's location, as revealed by Fairfax Media last month.

Ms King also highlighted concerns raised about access to medical records by health insurers, including in relation to worker’s compensation claims, which the government has said will not occur.


"We want to make sure that's not the case and we want to make sure that's not the case under the law," she said.


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.

Tuesday, 7 August 2018

Australian Digital Health Agency is considering adding DNA data to My Health Record


Crikey.com.au, 6 April 2018:

DNA DEBATE

The federal government’s controversial My Health Record program is capable of storing genomic data, such as cancer risks, using technology that both has huge research applications and highlights privacy and security concerns.

The Sydney Morning Herald reports that genome-sequencing company Genome.One, which can track genetic variations and therefore disease risks, has built “necessary infrastructure” for uploading sensitive genomic data into the opt-out system.

University of Canberra privacy expert Bruce Arnold has criticised the inherent risks of DNA-tracking technology and, just a week after the government backdown on police access to My Health Records, today’s news as again demonstrating a lack public consultation.

The Australian Digital Health Agency (ADHA) which is responsibe for My Health Record gave Genome.One, a wholly-owned subsidiary of The Garvan Institute, $40,000 in September 2017 to support the development of this software.

Its GoExplore™ software provides sequencing and analyses of patients’ DNA samples to assesses their risk of developing 52 hereditary conditions, including 31 cancers, 13 heart conditions, as well several other conditions where monitoring or intervention can be of benefit. 

In a change of focus, Genome.One and The Garvan Institute are reportedly no longer offering clinical reporting for genetic disease diagnosis or personal health genomics in Australia. This service was priced at $6,400 plus GST, with no Medicare rebate.

Staffing numbers in Genome.One have been severely cut, new capital is being sought and, Gavan has stated that it intends to spin off Genome.One software into a new company in which it will be a minority shareholder.

However, Genome.One still intends to pilot its genomics technology integrated into GP practice software and on !8 April 2018 its CEO stated; “We're working with some electronic medical record providers and we're hoping that we can get a trial underway at some point this year”.

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.

Lewis Ryan (Academic GP Registrar)
* 91 % of GP Registrars have never used My Health Record in a clinical context

* 65% of GP Registrars have never discussed My Health Record with a patient

* 78%  of GP Registrars have never received training in how to use My Health Record

* 73% of GP Registrars say lack of training is a barrier to using My Health Record

* 71% of  GP Registrars who have used the My Health Record system say that the user interface is a barrier

* Only 21% of  GP Registrars believe privacy is well protected in the My Health Record system

In fact Australia-wide only 6,510 general practice organisations to date have registered to use My Health Record and these would only represent a fraction of the 35,982 GPs practicing across the country in 2016-17.


UPDATE

Healthcare IT News, 3 August 2018:
The Federal Government’s Health Care Homes is forcing patients to have a My Health Record to receive chronic care management through the program, raising ethical questions and concerns about discrimination.
The government’s Health Care Homes trial provides coordinated care for those with chronic and complex diseases through more than 200 GP practices and Aboriginal Community Controlled Health Services nationally, and enrolment in the program requires patients to have a My Health Record or be willing to get one.
But GP and former AMA president Dr Kerryn Phelps claimed the demand for patients to sign up to the national health database to access Health Care Homes support is unethical.
“I have massive ethical concerns about that, particularly given the concerns around privacy and security of My Health Record. It is discriminatory and it should be removed,” Phelps told Healthcare IT News Australia.
Under a two-year trial beginning in late 2017, up to 65,000 people are eligible to become Health Care Homes patients as part of a government-funded initiative to improve care for those with long-term conditions including diabetes, arthritis, and heart and lung diseases.
Patients in the program receive coordinated care from a team including their GP, specialists and allied health professionals and according to the Department of Health: “All Health Care Homes’ patients need to have a My Health Record. If you don’t have a My Health Record, your care team will sign you up.”
Phelps said as such patients who don’t want a My Health Record have been unable to access a health service they would otherwise be entitled to.
“When you speak to doctors who are in involved in the Heath Care Homes trial, their experience is that some patients are refusing to sign up because they don’t want a My Health Record. So it is a discriminatory requirement.”
It has also raised concerns about possible future government efforts to compel Australians to have My Health Records.
“The general feedback I’m getting is that the Health Care Homes trial is very disappointing to say the least but, nonetheless, what this shows is that signing up to My Health Record could just be made a prerequisite to sign up for other things like Centrelink payments or workers compensation.”
Human rights lawyer and Digital Rights Watch board member Lizzie O’Shea claims patients should have a right to choose whether they are signed up to the government’s online medical record without it affecting their healthcare.
“It is deeply concerning to see health services force their patients to use what has clearly been shown to be a flawed and invasive system. My Health Record has had sustained criticism from privacy advocates, academics and health professionals, and questions still remain to be answered on the privacy and security of how individual's data will be stored, accessed and protected,” O’Shea said. [my yellow highlighting]

Wednesday, 1 August 2018

Turnbull Government prepares an end run around the Australian electorate?


In 1986 the Federal Government couldn’t get the national electorate to accept the Australia Card, a national identity card to be carried by all citizens.

Likewise in 2007 the wider electorate rejected the proposed Access Card, a national identity card with a unique personal identification number, which was to be linked to a centralised database expected to contain an unprecedented amount of personal and other information.

Federal Government also failed to have everyone embrace the idea of MyGov, a data sharing, one-stop digital portal for access to government services created in 2013. To date only 11.5 million people out of a population of over 24.9 million hold an account with MyGov.

When after three and a half years the populace did not register in sufficient numbers for the so-called Personally Controlled Electronic Health Record (PCEHR), an intrusive opt-in data retention system, government changed tack.

It relabelled PCEHR as My Health Record (MHR) in 2016 and broadened the number of agencies which could access an individual’s personal/health information. Decreeing it would become a mandatory data collection system applied to the entire Australian population, with only a short an opt-out period prior to full program implementation1.

However, it seems that the Turnbull Federal Government expects around 1.9 million people to opt-out of or cancel their My Heath Record in the next two months. Possibly with more cancellations to occur in the future, as privacy and personal safety become issues due to the inevitable continuation of MHR data breaches and the occurrence of unanticipated software vulnerabilities/failures.

So Turnbull and his Liberal and Nationals cronies have a backup in place in 2018 called the Data Sharing and Release Bill, which Introduces legislation to improve the use and reuse of public sector data within government and with private corporations outside of government, as well as granting access to and the sharing of data on individuals and businesses that is currently otherwise prohibited.

The bill also allows for the sharing of transaction, usage and product data with service competitors and comparison services. An as yet unrealised  provision which is currently being wrapped up in a pretty bow and called a consumer right - but one that is likely to be abused by the banking, finance, insurance, electricity/gas industry sectors.

The bill appears to override the federal privacy act where provisions are incompatible.

This is a bill voters have yet to see, because the Turnbull Government has not seen fit to publish the bill’s full text. Only an issues paper is available at present.

Notes:

1. Federal Government may have succeeded in retaining the personal details of every person who filled in the 2016 Census by permanently retaining these details and linking this information to their future Census information in order to track people overtime for the rest of their lives, but this win for government as Big Brother was reliant on stealth in implementation and was limited in what it could achieve at the time. 

Because not everyone ended up with a genuine unique identification key as an unknown number of individual citizens and permanent residents (possibly well in excess of half a million souls) as acts of civil disobedience deliberately filled in the national survey forms with falsified information or managed to evade filling in a form altogether. 

Sunday, 29 July 2018

When it comes to My Heath Record the words horse, stable, door, spring to mind


In January 2016 the Australian Digital Health Agency (ADHA) became a corporate Commonwealth established under the Public Governance, Performance and Accountability (Establishing the Australian Digital Health Agency) Rule.

It has a board appointed by the Minister for Health in whose portfolio it is situated and the board is the accountable body of the ADHA.

Currently Mr Jim Birch AM, Chair. Mr Rob Bransby, Dr Eleanor Chew, Dr Elizabeth Deven, Ms Lyn McGrath, Ms Stephanie Newell, Dr Bennie Ng,  Professor Johanna Westbrook and Michael Walsh sit on this board.

The executive team is headed by Tim Kelsey as CEO, with Professor Meredith Makeham as Chief Medical Adviser and Bettina McMahon, Ronan O’Connor, Terrance Seymour & Dr. Monica Trujillo as the four executive managers.

ADHA is also the designated Systems Operator for My Health Record which currently holds the personal health information of 5.98 million people across the country and will add the remaining 19 million after 15 October 2018 unless they opt out of being included in this national database.

Given the potential size of this database the question of cyber security springs to mind.

It seems that the Australian Digital Health Agency has not been independently audited for cyber resilience by the Australian National Audit Office (ANAO) ahead of beginning the mammoth task of collecting and collating the personal heath information of those19 million people.

Australian National Audit OfficePotential audit: 2018-19:

Management of cyber security risks in My Health Record

The audit would examine the effectiveness of the Australian Digital Health Agency’s management of cyber security risks associated with the implementation and ongoing maintenance of the My Health Record system.
My Health Record creates a record of Australians’ interactions with healthcare providers, and more than 5.5 million Australians have a My Health Record. The audit would focus on whether adequate controls are in place to protect the privacy and integrity of individual records.

It seems that the Australian general public still only has the honeypot's dubious word that it cannot be raided by unauthorised third parties.

Prime Minister Malcolm Turnbull has reacted to growing community concern about the number of agencies which can access My Health Records with a vague promise of "refinements" and with this outright lie; "The fact is that there have been no privacy complaints or breaches with My Health Record in six years and there are over 6 million people with My Health Records".

The Office of the Australian Information Commissioner has recorded complaints and at least 242 individual My Health Records have been part of mandatory data breach reports in 2015-16 to 2016-17, with nine of the 51 reported breach events involving "the unauthorised access of a healthcare recipient’s My Health Record by a third party".

BACKGROUND

Intermedium, 8 May 2018:

Re-platforming options for the My Health Record (MHR) system will soon be up for consideration, with an Australian Digital Health Agency (ADHA) spokesperson confirming that a request for information will be released in the next few months to inform plans to modernise the infrastructure underpinning Australia’s mammoth patient health database.

An open-source, cloud-based environment has already been flagged as a possibility for the MHR by Department of Health (DoH) Special Adviser for Strategic trategic Health Systems and Information Management Paul Madden at Senate Estimates in May last year. He also said that the re-platforming decision was one of many “variables” that needed to be squared away to accurately gauge how much the MHR system will cost beyond 2019-20.
“The variables in there include the re-platforming of the system to an open source environment, using cloud technology… which will be something we will not know the cost of until we hit the market to get a view on that”, Madden said last year. “Our commitment is to come back to the budget in 2019 to paint out those costs for the four years beyond.”
ADHA is scoping out MHR re-platforming options early, with the existing contract with the Accenture-led consortium not set to expire until 2020. As the “National Infrastructure Operator”, Accenture is tasked with running and maintaining MHR’s infrastructure. The prime contractor works with Oracle and Orion Health to provide the core systems and portals behind MHR.
Accenture was awarded the contract to design, build, integrate and test the then-personally controlled electronic health record system (PCEHR) back in 2011, and has signed 13 contracts worth a total of $709.53 million with DoH in relation to the MHR in that time. With the original infrastructure now over seven years old, ADHA recognise the importance of modernising the environment supporting the MHR....

The Sydney Morning Herald, Letter to the Editor, 26 July 2018. p20:

What happens to medical records when opting out?

Dr Kerryn Phelps reminds us that, if people don't opt out, the My Health Records Act allows disclosure of patients' health information to police, courts and the ATO without a warrant ("My Health Record backlash builds", July 25). This would be in addition to "health information such as allergies, medicines and immunisations" available for emergency staff.

How can the access be restricted to emergency staff? How can only certain categories of information be released when allergies and medication are part of general medical notes? I was not reassured by "serious penalties relating to the misuse of information do not apply to accidental misuse" on the website. I opted out.

My GP has told me that, nonetheless, she will be obliged to upload my records - which sounds credible since I have formally opted out with the government, not with my doctor's practice. So what happens - does my health record get kicked off "the cloud"? What exactly did I opt out of?

Denise De Vreeze [my yellow highlighting]

Friday, 20 July 2018

Slowly but surely Russian connections between the UK Brexit referendum campaign and the US presidential campaign are beginning to emerge


“We have concluded that there are risks in relation to the processing of personal data by many political parties. Particular concerns include: the purchasing of marketing lists and lifestyle information from data brokers without sufficient due diligence, a lack of fair processing, and use of third party data analytics companies with insufficient checks around consent….We have looked closely at the role of those who buy and sell personal data-sets in the UK. Our existing investigation of the privacy issues raised by their work has been expanded to include their activities in political processes….The investigation has identified a total of 172 organisations of interest that required engagement, of which around 30 organisations have formed the main focus of our enquiries, including political parties, data analytics companies and major social media platforms…..Similarly, we have identified a total of 285 individuals relating to our investigation.” [UK Information Commissioner’s Office, Investigation into the use of data analytics in political campaigns: Investigation update, July 2018]

Slowly but surely the Russian connections between the UK Brexit referendum campaign and the US presidential campaign are beginning to emerge.

The Guardian, 15 July 2018:

A source familiar with the FBI investigation revealed that the commissioner and her deputy spent last week with law enforcement agencies in the US including the FBI. And Denham’s deputy, James Dipple-Johnstone, confirmed to the Observer that “some of the systems linked to the investigation were accessed from IP addresses that resolve to Russia and other areas of the CIS [Commonwealth of Independent States]”.

It was also reported that Senator Mark Warner, vice chair of US Senate Intel Committee and Damian Collins MP, chair of the Digital, Culture, Media and Sport select committee inquiry into “fake news”, met in Washington on or about 16 July 2018 to discuss Russian interference in both British and American democratic processes during an Atlantic Council meeting.

UK Information Commissioner’s Office (ICO), media release, 10 July 2018:

Information Commissioner Elizabeth Denham has today published a detailed update of her office’s investigation into the use of data analytics in political campaigns.
In March 2017, the ICO began looking into whether personal data had been misused by campaigns on both sides of the referendum on membership of the EU.

In May it launched an investigation that included political parties, data analytics companies and major social media platforms.

Today’s progress report gives details of some of the organisations and individuals under investigation, as well as enforcement actions so far.

This includes the ICO’s intention to fine Facebook a maximum £500,000 for two breaches of the Data Protection Act 1998.

Facebook, with Cambridge Analytica, has been the focus of the investigation since February when evidence emerged that an app had been used to harvest the data of 50 million Facebook users across the world. This is now estimated at 87 million.
The ICO’s investigation concluded that Facebook contravened the law by failing to safeguard people’s information. It also found that the company failed to be transparent about how people’s data was harvested by others.
Facebook has a chance to respond to the Commissioner’s Notice of Intent, after which a final decision will be made.

Other regulatory action set out in the report comprises:

warning letters to 11 political parties and notices compelling them to agree to audits of their data protection practices;

an Enforcement Notice for SCL Elections Ltd to compel it to deal properly with a subject access request from Professor David Carroll;

a criminal prosecution for SCL Elections Ltd for failing to properly deal with the ICO’s Enforcement Notice;

an Enforcement Notice for Aggregate IQ to stop processing retained data belonging to UK citizens;

a Notice of Intent to take regulatory action against data broker Emma’s Diary (Lifecycle Marketing (Mother and Baby) Ltd); and
audits of the main credit reference companies and Cambridge University Psychometric Centre.

Information Commissioner Elizabeth Denham said:
“We are at a crossroads. Trust and confidence in the integrity of our democratic processes risk being disrupted because the average voter has little idea of what is going on behind the scenes.

“New technologies that use data analytics to micro-target people give campaign groups the ability to connect with individual voters. But this cannot be at the expense of transparency, fairness and compliance with the law.

She added:
“Fines and prosecutions punish the bad actors, but my real goal is to effect change and restore trust and confidence in our democratic system.”

A second, partner report, titled Democracy Disrupted? Personal information and political influence, sets out findings and recommendations arising out of the 14-month investigation.

Among the ten recommendations is a call for the Government to introduce a statutory Code of Practice for the use of personal data in political campaigns.

Ms Denham has also called for an ethical pause to allow Government, Parliament, regulators, political parties, online platforms and the public to reflect on their responsibilities in the era of big data before there is a greater expansion in the use of new technologies.

She said:
“People cannot have control over their own data if they don’t know or understand how it is being used. That’s why greater and genuine transparency about the use of data analytics is vital.”

In addition, the ICO commissioned research from the Centre for the Analysis of Social Media at the independent thinktank DEMOS. Its report, also published today, examines current and emerging trends in how data is used in political campaigns, how use of technology is changing and how it may evolve in the next two to five years. 

The investigation, one of the largest of its kind by a Data Protection Authority, remains ongoing. The 40-strong investigation team is pursuing active lines of enquiry and reviewing a considerable amount of material retrieved from servers and equipment.

The interim progress report has been produced to inform the work of the DCMS’s Select Committee into Fake News.

The next phase of the ICO’s work is expected to be concluded by the end of October 2018.

The Washington Post, 28 June 2018:

BRISTOL, England — On Aug. 19, 2016, Arron Banks, a wealthy British businessman, sat down at the palatial residence of the Russian ambassador to London for a lunch of wild halibut and Belevskaya pastila apple sweets accompanied by Russian white wine.

Banks had just scored a huge win. From relative obscurity, he had become the largest political donor in British history by pouring millions into Brexit, the campaign to disentangle the United Kingdom from the European Union that had earned a jaw-dropping victory at the polls two months earlier.

Now he had something else that bolstered his standing as he sat down with his new Russian friend, Ambassador Alexander Yakovenko: his team’s deepening ties to Donald Trump’s insurgent presidential bid in the United States. A major Brexit supporter, Stephen K. Bannon, had just been installed as chief executive of Trump’s campaign. And Banks and his fellow Brexiteers had been invited to attend a fundraiser with Trump in Mississippi.

Less than a week after the meeting with the Russian envoy, Banks and firebrand Brexit politician Nigel Farage — by then a cult hero among some anti-establishment Trump supporters — were huddling privately with the Republican nominee in Jackson, Miss., where Farage wowed a foot-stomping crowd at a Trump rally.
Banks’s journey from a lavish meal with a Russian diplomat in London to the raucous heart of Trump country was part of an unusual intercontinental charm offensive by the wealthy British donor and his associates, a hard-partying lot who dubbed themselves the “Bad Boys of Brexit.” Their efforts to simultaneously cultivate ties to Russian officials and Trump’s campaign have captured the interest of investigators in the United Kingdom and the United States, including special counsel Robert S. Mueller III.

Vice News, 11 June 2018:

Yakovenko is already on the radar of special counsel Robert Mueller, who is investigating Russian interference in the U.S. presidential election, after he was named in the indictment of ex-Trump campaign aide George Papadopoulos….

Banks, along with close friend and former Ukip leader Nigel Farage, was among the very first overseas political figures to meet Trump after his surprise victory in November 2016.

It also emerged over the weekend that Banks passed contact information for Trump’s transition team to the Russians.

Thursday, 7 June 2018

Only 39 days to go until concerned Australian citizens can opt out of the Turnbull Government's collection of personal health information for its national database


Apparently this email is currently being sent out to registered Australian citizens.

Australian Digital Health Agency, email, 5 June 2018:

Hello,

You are receiving this email because you registered your email address at myhealthrecord.gov.au to find out more information about how to opt-out of the My Health Record system.

If you do not want a My Health Record, you must register your choice between 16 July and 15 October 2018 during the opt-out period. It is not possible to opt-out of having a record before the opt-out period starts.

The opt-out period will not apply to individuals who have previously chosen to have a My Health Record, or were included in the Nepean Blue Mountains or North Queensland opt-out trials in 2016. Individuals who have an existing My Health Record can cancel their record at any time. Instructions on cancelling a record can be found on the My Health Record website.

Once the opt-out period starts you will receive another email letting you know that the opt-out period has started and what to do if you still want to opt-out.

A My Health Record is a secure online summary of an individual’s key health information. 1 in 5 Australians already have one. It’s an individual’s choice who sees their My Health Record, what’s in it and who it is shared with. My Health Record has safeguards in place to protect an individuals’ information including encryption, firewalls and secure login.

For further information about the My Health Record, please visit the My Health Record website.

Thank you,

The My Health Record System Operator
www.digitalhealth.gov.au

[my yellow highlighting]

Wednesday, 16 May 2018

An insider has finally admitted what any digital native would be well aware of - your personal health information entered into a national database will be no safer that having it up on Facebook


Remembering that a federal government national screening program, working with with a private entity, has already accessed personal information from Medicare without consent of registered individuals and entered these persons into a research program - again without consent - and these individuals apparently could not easily opt out of being listed as a research subject but were often only verbally offered  the option of declining to take part in testing, which presumably meant that health data from other sources was still capable of being collected about them by the program. One has to wonder what the Turnbull Government and medical establishment actually consider patient rights to be in practice when it comes to "My Health Record".

Healthcare IT News, 4 May 2018:

Weeks before the anticipated announcement of the My Health Record opt out period, an insider’s leak has claimed the Australian Digital Health Agency has decided associated risks for consumers “will not be explicitly discussed on the website”.

As the ADHA heads towards the imminent announcement of the three-month window in which Australians will be able to opt out of My Health Record before being signed up to the online health information repository, the agency was caught by surprise today when details emerged in a blog post by GP and member of the steering group for the national expansion of MHR, Dr Edwin Kruys.

Kruys wrote that MHR offers “clear benefits” to healthcare through providing clinicians with greater access to discharge summaries, pathology and diagnostic reports, prescription records and more, but said “every digital solution has its pros and cons” and behind-the-scenes risk mitigation has been one of the priorities of the ADHA. However, he claimed Australians may not be made aware of the risks involved in allowing their private medical information to be shared via the Federal Government’s system.

“It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website,” Kruys wrote.

“This obviously includes the risk of cyber attacks and public confidence in the security of the data.”

The most contentious contribution in the post related to the secondary use of Australians’ health information, the framework of which has yet to be announced by Health Minister Greg Hunt.

Contacted by HITNA, the agency moved swiftly to have Kruys delete the paragraph relating to secondary use.

In the comment that has since been removed, Kruys wrote, “Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off.”

Under the My Health Records Act 2012, health information in MHR may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient. One of the functions of the system operator is “to prepare and provide de-identified data for research and public health purposes”. 

Before these provisions of the act will be implemented, a framework for secondary use of MHR systems data must be established. 

HealthConsult was engaged to assist the Federal Government in developing a draft framework and implementation plan for the process and within its public consultation process in 2017 received supportive submissions from the Australasian College of Health Informatics, the Australian Bureau of Statistics and numerous research institutes, universities, and clinicians’ groups.

Computerworld, 14 May 2018:

Use of both de-identified data and, in some circumstances, identifiable data will be permitted under a new government framework for so-called “secondary use” of data derived from the national eHealth record system. Linking data from the My Health Record system to other datasets is also allowed under some circumstances.

The Department of Health last year commissioned the development of the framework for using My Health Record data for purposes other than its primary purpose of providing healthcare to an individual.

Secondary use can include research, policy analysis and work on improving health services.

Under the new framework, individuals who don’t want their data used for secondary purposes will be required to opt-out. The opt-out process is separate from the procedure necessary for individuals who don’t want an eHealth record automatically created for them (the government last year decided to shift to an opt-out approach for My Health Record)……

Access to the data will be overseen by an MHR Secondary Use of Data Governance Board, which will approve applications to access the system.

Any Australian-based entity with the exception of insurance agencies will be permitted to apply for access the MHR data. Overseas-based applicants “must be working in collaboration with an Australian applicant” for a project and will not have direct access to MHR data.

The data drawn from the records may not leave Australia, but under the framework there is scope for data analyses and reports produced using the data to be shared internationally……

The Department of Health came under fire in 2016 after it released for download supposedly anonymised health data. Melbourne University researchers were able to successfully re-identify a range of data.

Last month the Office of the Australian Information Commissioner revealed that health service providers accounted for almost a quarter of the breaches reported in the first six weeks of operation of the Notifiable Data Breach (NDB) scheme.


Australians who don't want a personal electronic health record will have from July 16 to October 15 to opt-out of the national scheme the federal government announced on Monday.

Every Australian will have a My Health Record unless they choose to opt-out during the three-month period, according to the Australian Digital Health Agency.

The announcement follows the release of the government’s secondary use of data rules earlier this month that inflamed concerns of patient privacy and data use.


Under the framework, medical information would be made available to third parties from 2020 - including some identifying data for public health and research purposes - unless individuals opted out.

In other news....... 


A cyber attack on Family Planning NSW's website has exposed the personal information of up to 8000 clients, including women who have booked appointments or sought advice about abortion, contraception and other services.

Clients received an email from FPNSW on Monday alerting them that their website had been hacked on Anzac Day.

The compromised data contained information from roughly 8000 clients who had contacted FPNSW via its website in the past 2½ years to make appointments or give feedback.

It included the personal details clients entered via an online form, including names, contact details, dates of birth and the reason for their enquiries….

The website was secured by 10am on April 26, 2018 and all web database information has been secure since that time

SBS News, 14 May 2018:

Clients were told Family Planning NSW was one of several agencies targeted by cybercriminals who requested a bitcoin ransom on April 25…..
The not-for-profit has five clinics in NSW, with more than 28,000 people visiting every year.

The most recent Digital Rights Watch State of Digital Rights (May 2018) report can be found here.

The report’s 8 recommendations include:

Repeal of the mandatory metadata retention scheme

Introduction of a Commonwealth statutory civil cause of action for serious invasions of privacy

A complete cessation of commercial espionage conducted by the Australian Signals Directorate

Changes to copyright laws so they are flexible, transparent and provide due process to users

Support for nation states to uphold the United Nations Convention on the Rights of the Child in the digital age

Expand the definition of sensitive information under the Privacy Act to specifically include behavioural biometrics

Increase measures to educate private businesses and other entities of their responsibilities under the Privacy Act regarding behavioural biometrics, and the right to pseudonymity

Introduce a compulsory register of entities that collect static and behavioural biometric data, to provide the public with information about the entities that are collecting biometric data and for what purpose

The loopholes opened with the 2011 reform of the FOI laws should be closed by returning ASD, ASIO, ASIS and other intelligence agencies to the ambit of the FOI Act, with the interpretation of national security as a ground for refusal of FOI requests being reviewed and narrowed

Telecommunications providers and internet platforms must develop processes to increase transparency in content moderation and, make known what content was removed or triggered an account suspension.