Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Wednesday, 29 August 2018

“Shit Life Syndrome” is sending Britons and Americans to an early grave…..



With Scott Morrison as the new prime minister, the Abbott-Turnbull era persistent attacks on the social fabric of the nation are bound to continue. Thus ensuring that Australians follow down the same path as Britain and America?
The Guardian, 18 August 2018:

Britain and America are in the midst of a barely reported public health crisis. They are experiencing not merely a slowdown in life expectancy, which in many other rich countries is continuing to lengthen, but the start of an alarming increase in death rates across all our populations, men and women alike. We are needlessly allowing our people to die early.

In Britain, life expectancy, which increased steadily for a century, slowed dramatically between 2010 and 2016. The rate of increase dropped by 90% for women and 76% for men, to 82.8 years and 79.1 years respectively. Now, death rates among older people have so much increased over the last two years – with expectations that this will continue – that two major insurance companies, Aviva and Legal and General, are releasing hundreds of millions of pounds they had been holding as reserves to pay annuities to pay to shareholders instead. Society, once again, affecting the citadels of high finance.

Trends in the US are more serious and foretell what is likely to happen in Britain without an urgent change in course. Death rates of people in midlife (between 25 and 64) are increasing across the racial and ethnic divide. It has long been known that the mortality rates of midlife American black and Hispanic people have been worse than the non-Hispanic white population, but last week the British Medical Journal 
published an important study re-examining the trends for all racial groups between 1999 and 2016.

The malaises that have plagued the black population are extending to the non-Hispanic, midlife white population. As the report states: “All cause mortality increased… among non-Hispanic whites.” Why? “Drug overdoses were the leading cause of increased mortality in midlife, but mortality also increased for alcohol-related conditions, suicides and organ diseases involving multiple body systems” (notably liver, heart diseases and cancers).

US doctors coined a phrase for this condition: “shit-life syndrome”. Poor working-age Americans of all races are locked in a cycle of poverty and neglect, amid wider affluence. They are ill educated and ill trained. The jobs available are drudge work paying the minimum wage, with minimal or no job security. They are trapped in poor neighbourhoods where the prospect of owning a home is a distant dream. There is little social housing, scant income support and contingent access to healthcare.

Finding meaning in life is close to impossible; the struggle to survive commands all intellectual and emotional resources. Yet turn on the TV or visit a middle-class shopping mall and a very different and unattainable world presents itself. Knowing that you are valueless, you resort to drugs, antidepressants and booze. You eat junk food and watch your ill-treated body balloon. It is not just poverty, but growing relative poverty in an era of rising inequality, with all its psychological
side-effects, that is the killer.

Shit-life syndrome captures the truth that the bald medical statistics have economic and social roots. Patients so depressed they are prescribed or seek opioids – or resort to alcohol – are suffering not so much from their demons but from the circumstances of their lives. They have a lot to be depressed about. They, and tens of millions like them teetering on the edge of the same condition, constitute Donald Trump’s electoral base, easily tempted by rhetoric that pins the blame on dark foreigners, while castigating countries such as Finland or Denmark, where the trends are so much better, as communist. In Britain, they were heavily represented among the swing voters who delivered Brexit.

Read the full article here.

NOTE: The last time the United States saw a prolonged life expectancy decrease due to natural causes was during the Spanish Influenza pandemic of 1917-1919 when life expectancy fell by twelve years. 

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”.

Thursday, 2 August 2018

NSW Roads & Maritime Services finally come clean: We don't give a damn about any of the concerns Woombah & Iluka residents have about our asphalt plant, it's only Pacific Complete's bottom line that matters


The Daily Examiner via Press Reader, 1 August 2018:

ROADS and Martime Services has revealed it will build at least two asphalt batching plants near the Pacific Highway, most likely between Tyndale and the Iluka turnoff, next year.

Pacific Highway general manager Bob Higgins said the RMS has pressed the pause button on construction of one plant at Woombah, but the need to supply the Glenugie to Iluka Rd turnoff section with 170,000 tonnes of asphalt would require two plants.

He said the RMS would review the supply strategy for the manufacture and delivery of asphalt on the stretch of highway upgrade after protests from the Woombah community.

But Mr Higgins said if push came to shove when the RMS review decided on locations, residents’ objections would take second place to the technical needs of the project. [my yellow highlighting]

What a travesty Pacific Highway Upgrade community consultations are cannot get much clearer than this.

I'm sure local residents will not be pleased to have their fears confirmed.

Whether he meant to or not, Bob Higgins has probably just cemented the proposed Woombah asphalt batching site as a March 2019 NSW state election issue in the Clarence electorate for both the NSW National Party and the Berejiklian Coalition Government.

No-one likes to be told their valid concerns - about environmental impact, road safety, air quality and potential reduction in tourism numbers which underpin the local economy - don't matter to the state government down in Sydney.

BACKGROUND






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]

Tuesday, 24 July 2018

Australian Health Minister Greg Hunt is not being truthful about My Health Record and he knows it


On 16 July 2018 the Australian Minister for Health and Liberal MP for Flinders, Gregory Andrew 'Greg' Hunt, characterised My Health Record as a "secure summary" of an individual's key health information.

The Office of the Australian Information Commissioner (OAIC) tells a rather different story.

One where 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".

A story which also involves at least 96 instances of Medicare uploading data to the wrong digital health records and also uploading claim information to another 123 My Health Records apparently without the knowledge or consent of the persons in whose names these My Health Records had been created.

There were other instances where MyGov accounts held by healthcare recipients were incorrectly linked to the My Health Records of other healthcare recipients.

Prior to the database name change and system change from opt-in to opt-out there had been another 9 data breaches of an unspecified nature reported, involving an unknown number of what are now called My Health Records.

More instances are now being aired in mainstream and social media where My Health Records were created by DHS Medicare Repository Services or other agents/agencies without the knowledge or consent of the individual in whose name the record had been created.
Healthcare IT News 16 July 2018


If this is how the national e-health database was officially functioning malfunctioning by 30 June 2017, how on earth is the system going to cope when it attempts to create millions of new My Health Records after 15 October 2018?

On the first day of the 60 day opt-out period about 20,000 people refused to have a My Health Record automatically created for them and at least one Liberal MP has also opted out, the Member for Goldstein and member of the House of Representatives Standing Committee on Health, Aged Care and Sport Tim Wilson. 

Prime Minister Malcolm Bligh Turnbull has stated his view that mass withdrawals will not kill the national digital health records system - perhaps because he and his government are possibly contemplating adopting the following three coercive recommendations found amongst the thirty-one recommendations included in the Siggins Miller November 2016 Evaluation of the Participation Trials for the My Health Record: Final Report:

20. Use all mechanisms available in commissioning and funding health services as vehicles to require the use of the My Health Record to obtain funds where practical.

21. Consider ways to require the use of the My Health Record system by all healthcare providers and how to best use the Government’s purchasing power directly (e.g. in the aged care sector), via new initiatives as they arise (such the Health Care Home initiative) or via PHNs commissioning clinical services (e.g. require use of the My Health Record system in all clinical and aged care services that receive Commonwealth funds). Such requirements should have a timeframe within which healthcare providers need to become compliant.

22. Explore with health insurers how they could encourage preferred suppliers and clients to use the My Health Record system as part of their push for preventive care and cost containment.

That the My Health Record is not about improving health service delivery for individual patients is indicated by the fact that a My Health Record is retained by the National Repositories Service for between 30 and up to 130 years after death and, even during an individual's lifetime can be accessed by the courts, police, other government agencies and private corporations listed as research organisations requiring medical/lifestyle information for what is essentially commercial gain, at the discretion of the Secretary of the Department of Health or the Digital Health Agency Systems Operator. See: My Health Records Act 2012 (20 September 2017), Subdivision B - s63 to s70

To put it bluntly, this national database will allow federal government to monitor the personal lives of Australian citizens more closely, enforce civil & criminal law, monetise collated data for its own benefit  and, weaponize the personal information collected anytime it feels threatened by dissenting opinion.

NOTES

OAIC annual reports:


The Guardian, 22 July 2018:

Australia’s impending My Health Record system is “identical” to a failed system in England that was cancelled after it was found to be selling patient data to drug and insurance companies, a British privacy expert has said.

My Health Record is a digital medical record that stores medical data and shares it between medical providers. In the UK, a similar system called care.data was announced in 2014, but cancelled in 2016 after an investigation found that drug and insurance companies were able to buy information on patients’ mental health conditions, diseases and smoking habits.

The man in charge of implementing My Health Record in Australia, Tim Kelsey, was also in charge of setting up care.data. 

Phil Booth, the coordinator of British privacy group Medconfidential, said the similarities were “extraordinary” and he expected the same privacy breaches to occur.

“The parallels are incredible,” he said. “It looks like it is repeating itself, almost like a rewind or a replay. The context has changed but what is plainly obvious to us from the other side of the planet, is that this system seems to be the 2018 replica of the 2014 care.data.” [my yellow highlighting]

North Coast Voices , 22 July 2018, Former Murdoch journalist in charge of MyHealth records –what could possibly go wrong?

UPDATE

Australian Parliamentary Library, Flagpost, 23 July 2018:

Section 70 of the My Health Records Act 2012 enables the System Operator (ADHA) to ‘use or disclose health information’ contained in an individual’s My Health Record if the ADHA ‘reasonably believes that the use or disclosure is reasonably necessary’ to, among other things, prevent, detect, investigate or prosecute any criminal offence, breaches of a law imposing a penalty or sanction or breaches of a prescribed law; protect the public revenue; or prevent, detect, investigate or remedy ‘seriously improper conduct’. Although ‘protection of the public revenue’ is not explained, it is reasonable to assume that this might include investigations into potential fraud and other financial offences involving agencies such as Centrelink, Medicare, or the Australian Tax Office. The general wording of section 70 is a fairly standard formulation common to various legislation—such as the Telecommunications Act 1997—which appears to provide broad access to a wide range of agencies for a wide range of purposes. 

While this should mean that requests for data by police, Home Affairs and other authorities will be individually assessed, and that any disclosure will be limited to the minimum necessary to satisfy the request, it represents a significant reduction in the legal threshold for the release of private medical information to law enforcement. Currently, unless a patient consents to the release of their medical records, or disclosure is required to meet a doctor’s mandatory reporting obligations (e.g. in cases of suspected child sexual abuse), law enforcement agencies can only access a person’s records (via their doctor) with a warrant, subpoena or court order....

It seems unlikely that this level of protection and obligation afforded to medical records by the doctor-patient relationship will be maintained, or that a doctor’s judgement will be accommodated, once a patient’s medical record is uploaded to My Health Record and subject to section 70 of the My Health Records Act 2012. The AMA’s Guide to Medical Practitioners on the use of the Personally Controlled Electronic Health Record System (from 2012) does not clarify the situation.

Although it has been reported that the ADHA’s ‘operating policy is to release information only where the request is subject to judicial oversight’, the My Health Records Act 2012 does not mandate this and it does not appear that the ADHA’s operating policy is supported by any rule or regulation. As legislation would normally take precedence over an agency’s ‘operating policy’, this means that unless the ADHA has deemed a request unreasonable, it cannot routinely require a law enforcement body to get a warrant, and its operating policy can be ignored or changed at any time.

The Health Minister’s assertions that no one’s data can be used to ‘criminalise’ them and that ‘the Digital Health Agency has again reaffirmed today that material … can only be accessed with a court order’ seem at odds with the legislation which only requires a reasonable belief that disclosure of a person’s data is reasonably necessary to prevent, detect, investigate or prosecute a criminal offence…..

Although the disclosure provisions of different agencies may be more or less strict than those of the ADHA and the My Health Records Act 2012, the problem with the MHR system is the nature of the data itself. As the Law Council of Australia notes, ‘the information held on a healthcare recipient’s My Health Record is regarded by many individuals as highly sensitive and intimate’. The National Association of People with HIV Australia has suggested that ‘the department needs to ensure that an individual’s My Health Record is bound to similar privacy protections as existing laws relating to the privacy of health records’. Arguably, therefore, an alternative to the approach of the current scheme would be for medical records registered in the MHR system to be legally protected from access by law enforcement agencies to at least the same degree as records held by a doctor.

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.

Thursday, 10 May 2018

Saying "Thank you"......




A letter from mum and dad

Ed,

We will never forget certain things from this journey ever in our lives. On March 22, 2018 our lives changed forever.

Watching our baby Emerald (7 months old) go into cardiac arrest and multi organ failure one hour after arriving at our local hospital, me just taking her because I thought she was sick, then it all went downhill from there. The NETs retrieval team was called in to take us to Westmead; Emerald suffered a seizure in Grafton from low blood sugar that resulted in a brain injury and fluid on her brain, needing life support. It took NETS another six hours to stabilise her to get on the plane. Emerald was blue and lifeless and no one thought she would make it; in that moment I thought my baby had died, then the next day eight hours after arrival at the children’s hospital, we had a diagnosis of a very rare CHD called ALCAPA that Emerald had been silently fighting for seven months and was never picked up. They took her for major open heart surgery at 8am on March 23; the longest day of my life. They told me to be prepared for the worst as they expected Emerald to come back on the ECMO (the double bypass machine for lungs and heart).

3pm came and Emmy was about to come out of surgery and she wasn’t on the machine! When the head surgeon sat me down and pretty much told me no one told him about her low blood sugar and Emerald suffered another seizure creating a complication for the surgery, yet she still didn’t come back on that machine, they kept telling me that she would end up on it to give her heart a rest; the next week was very touch and go, we almost lost our girl three more times but still no ECMO; Emerald was fighting so hard
And the doctors telling me that her liver and kidneys won’t make it; she was so puffed up with fluid and so yellow from the jaundice and that they thought she had more seizures, but couldn’t tell because she was on the muscle relaxant, the only thought in my head was if she was going to be ok. I didn’t care if her brain injury resulted in her being a little more special, I just wanted to know she was ok – they couldn’t guarantee us anything and they still can’t. Emerald also contacted two blood infections, pneumonia from being on the life support and a collapsed lung.

This experience has been very trying and testing and very traumatising and we feel so out of our comfort zone being here and almost 700km away from home.

A few anxiety attacks from mum and dad over the last 5 weeks
Some very touch and go moments I will never forget.
We are slowly on the road to recovery, Emerald has astounded all her doctors with how far she has come and that she ever once stopped fighting.
Emerald is a miracle five weeks post op and she is saying mum, hi, can do high 5; eating solids again and rolling over from side to side!

I could not be standing here today beside my heart warrior if it wasn’t for the support from my family and friends and the entire community who has rallied around my daughter to help us. Thank you for all the donations and the prayers; we are truly blessed to have such caring kind hearted people in our lives and our little gem is fighting to get back to our little community so we can say thank you to everyone that has helped us.
Thank you from the bottom of my heart.

I know this journey still has a long, long way to go and the shock has worn off finally and is only just hitting me now, but every day is a step closer to home and Emmy is improving every single day.
And I appreciate everything you all have done – Thank you.

Thank you for never leaving Emerald in the dark.
Jess and Kev – Emerald’s parents

Sunday, 29 April 2018

HTLV-1 Infection: “I suspect we would have dealt with the problem before now if it was in Sydney”



The Guardian, 24 April 2018:

Researchers say HTLV-1 is more widespread across central and northern Australia than previously thought. Dr Lloyd Einsiedel is an infectious diseases clinician with the Baker Heart and Diabetes Institute based at Alice Springs hospital.

“We cover all the way out to the western desert and we have patients from northern South Australia, and it’s endemic throughout our entire catchment area of a million square kilometres,” Einsiedel says.

“So it’s very suggestive that we have a major problem and it really pays no attention to borders, these very artificial constructs of Europeans.”

Einsiedel worries there will be “significant mortality” over the next five to 10 years from HTLV-1 related bronchiectasis (lung disease). The region already has the highest reported prevalence of adult bronchiectasis in the world.

I suspect we would have dealt with the problem before now if it was in Sydney
Dr Lloyd Einsiedel

Einsiedel says testing and treatment are a priority. There also needs to be a public awareness campaign in Aboriginal languages, and all remote area health workers need to be educated too.

However, HTLV1 presents a unique set of problems.

First, the world doesn’t know enough about it. In the early 1980s, HTLV-1 and HIV were discovered around the same time but HIV was a major global emergency that rightly got attention. HTLV-1 was thought to be asymptomatic; people might carry it their whole lives and never show any adverse effects. Five to 10% of patients might develop fatal lung disease or leukaemia in later life but most would be fine. A map of the world’s HTLV-1 hotspots reveals another clue as to why it’s so neglected. [my yellow highlighting]


Guardian graphic | Source: ECDC


Read the full aticle here.