Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Monday, October 09, 2017

Weekly Australian Health IT Links – 9th October, 2017.

Here are a few I have come across the last week or so.
Note: Each link is followed by a title and a few paragraphs. For the full article click on the link above title of the article. Note also that full access to some links may require site registration or subscription payment.

General Comment

A pretty quiet week with some effort to discuss secondary use of myHealth Record data and how far it should be allowed to go. An opportunity exists to have your say for a bit over a month.
Otherwise stuff in surveillance to prevent terrorism and a new opt-in digital identity system.
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Government seeking input into additional uses for My Health Record private medical information

Lynne Minion | 06 Oct 2017
The use of Australians’ private medical information for commercial gain by pharmaceutical companies, and the provision of “patient identified” data to researchers, are options on the table as part of a public consultation process into My Health Record launched yesterday.
The Federal Department of Health has contracted HealthConsult to develop a framework and draft implementation plan for the secondary use of data contained in My Health Record, described in the Public Consultation Paper as “the first data set that has the potential to allow analysis around the full set of health services received by a person”.
The framework will determine which organisations can gain access to this valuable personal information, which will include GP and specialist diagnoses, as well as pathology tests and medications prescribed.
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Govt details plan to share de-identified e-health data

By Justin Hendry on Oct 6, 2017 11:48AM

Begins consultation process.

The federal government has kicked off public consultation on the potential secondary uses of de-identified health data sourced from the e-health records of Australians.
The plan to mine My Health Record data for research and public health purposes has been on the cards since late 2015, when the Department of Health approached the market for advice on the steps it would need to take before allowing the “secondary use” of the information collected.
It engaged health industry management consultancy firm HealthConsult shortly after, and planned to begin consultations on the development of a framework for the secondary uses of My Health Record data in October 2016.
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Public input sought on use of health record data

De-identified My Health Record data could potentially be used by researchers
Rohan Pearce (Computerworld) 06 October, 2017 07:00
A public consultation has begun on potential uses of de-identified data drawn from Australia’s national e-health record system.
The government in its May budget set aside $374.2 million for the expansion of the My Health Record system as it shifts to an ‘opt-out’ model. Under the new model, a health record will be created for every Australian citizen unless they request otherwise. (Once a record is created it can’t be deleted, just rendered inaccessible.)
Some 5 million Australians already have records.
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Star Trek-style hologram doctors on the horizon

'Holoportation' will reduce travel costs and waiting times for patients
3rd October 2017
Star Trek-style holograms of GPs could soon replace real home visits, according to an Australian home-care company.
Like the holographic chief medical officer in the hit TV series Voyager technology currently in development will allow doctors to offer real-time ‘face-to-face’ consultations via virtual reality, says Perth-based company Silver Chain.
The project, called Enhanced Medical Mixed Reality, uses HoloLens, a virtual reality headset developed by Microsoft.
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Australian in-home care provider launches world-first holographic doctor

Lynne Minion | 03 Oct 2017
A global-first holographic doctor that promises to revolutionise patient care and allow people to remain in their homes for longer has been launched by an Australian community care provider.
Developed by the Silver Chain Group through its partnership with Microsoft, the ground-breaking technology will project healthcare professionals into clients’ homes via a “HoloLens” headset and share clinical data in real time.
Chief Executive of Silver Chain Dr Christopher McGowan said the innovation integrates “mixed reality” technology with real life and holograms, and will prevent the need for some patients to be transferred to hospital.
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World-first holographic doctor launched in Perth

Cathy O’Leary, Medical Editor
Tuesday, 3 October 2017 12:20AM
The world’s first “holographic doctor” who can be suspended into the living rooms of patients has been launched in Perth.
The cutting-edge technology, developed by community health provider Silver Chain in conjunction with Microsoft, will allow health care professionals to visit clients in holographic form, projected via a “HoloLens” headset.
Doctors will effectively “see through the eyes of the nurse” as the consultation takes place and they share access to clinical data such as blood pressure in real time.
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  • Updated Oct 4 2017 at 5:16 PM

Facial recognition database pushes us towards Orwellian future

News that state governments plan to acquiesce to a federal government move to provide the facial biometrics of citizens from driving licences for use in a national security database should set off all kinds of alarms in the minds of law-abiding Australians.
The system will work by allowing CCTV cameras everywhere to recognise our faces because of the details taken from our licences. These photographs are used to create a faceprint which, like a fingerprint, can distinguish us based on the unique features that we possess.
Anyone who has had a passport photo taken in the facial recognition era will know that it is still not always an exact science – lighting has to be correct and people have to remove their glasses, but this is so the software can create a perfect map of our faces. The system records things like the distance between your eyes, bone structure, how thick your lips are, what shape your nose is, how big your eyes are and – depending on how detailed they are going – can include retina scans.
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  • Updated Oct 6 2017 at 5:49 PM

George Orwell had nothing on what's coming around the corner in facial recognition

Lester walks into a KFC outlet in Hangzhou, eastern China, orders a chicken, picks up the order and bolts for the door. By the time he has run across the adjoining street, patrolling police have pictures of him on their mobile phones, including details of prior convictions in Europe and Australia. They pick him up seconds later.
Around the same time, Stephen Paddock strolls into the Mandalay Bay Resort and Casino Hotel in Las Vegas, takes 10 suitcases up to his room on the 32nd floor, and unpacks 23 guns.
Three days later he smashes out a window in his room and rains death on an outdoor country music festival on the ground below, murdering 58 people and injuring about 500, before shooting himself as police close in.
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Federal government pushing ahead with opt-in digital ID system

Tom McIlroy
Published: October 5 2017 - 12:00AM
The federal government is taking its plans for an opt-in digital ID system to the private sector for feedback, offering the potential of a nationally-consistent tool for Australians to prove their identities online.
Assistant Minister for Digital Transformation Angus Taylor will announce plans to approach industry for expert feedback on standards for the project in Wollongong on Thursday, as it seeks a workable and well-developed framework ahead of wider testing.
The move comes as the government seeks drivers' license data and photos from state and territory governments as part of its efforts to build a national database for anti-terror strategies.
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Are organisations in denial about My Health Record’s safety?

6 October 2017

TECH TALK

If you believe the RACGP, the AMA and the Australian Digital Health Agency, the illegal sale of Medicare numbers doesn’t expose any security dangers with My Health Record.
All three organisations have fronted a Senate inquiry into how Medicare numbers ended up for sale on the ‘dark web’ for a bargain rate of about $25 each in July.
The prevailing theory is that whoever stole the Medicare numbers exploited legitimate access to the Health Professional Online Services (HPOS) website, and senators wanted to know if the My Health Record could be vulnerable in the same way.
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Digital upheaval asks demanding questions of Austalia’s health sector

Digital transformation has been slow to arrive to the healthcare sector because the sector is inordinately complex, fraught with risk and regulation and the economics of supply and demand, especially around the services of doctors, has retarded the normal rapid equalisation of informational power that  digital brings to the consumer, in this case, the patient.
But things are starting to change and quite quickly as businesses outside of the sector start to chase opportunities.
 Take Equinix as a case in point. 
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5 October 2017

Australian digital health at the crossroads

Posted by Jeremy Knibbs
Digital transformation has been slow to arrive in the healthcare sector, for good reason.
The sector is inordinately complex, fraught with risk and regulation, and the economics of supply and demand, especially around the services of doctors, has retarded the normal rapid equalisation of informational power that digital technology brings to the consumer, in this case, the patient.
But things are starting to change, and quite quickly.
One sign is the interest in the sector of a little known, but huge and powerful, company called Equinix. In the terminology of the seminal economics bestseller Freakonomics, Equinix is a “connector” organisation. Connectors are the facilitators of mass markets. They arrive and work at the beginnings of big changes to markets.
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Design guide to help health app devs stay legal and safe

Researchers trawl legislation and best practice policies to simplify developers' work
George Nott (Computerworld) 06 October, 2017 13:41
There are more than 250,000 health apps on the market, but a lack of clear regulation and developers’ ignorance of existing rules, could mean they are putting users at risk.
The sheer number of apps – and the widespread perception they provide cost-effective, accessible healthcare – has given rise to consumers receiving delayed or unnecessary diagnoses, being recommended inappropriate treatment, getting misled into making purchases, as well as a raft of privacy issues.
Researchers at the University of Sydney are hoping to minimise such apps’ potential for harm with a design guide aimed at developers, to help them meet their regulatory requirements and follow emerging best practices.
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Australia’s new digital mental health gateway now live

As part of our over $4 billion annual investment in mental health, the Turnbull Government is today launching our new digital mental health gateway – Head to Health.
Page last updated: 07 October 2017
7 October 2017
As part of our over $4 billion annual investment in mental health, the Turnbull Government is today launching our new digital mental health gateway – Head to Health.
Head to Health is an essential tool for the one in five working age Australians who will experience a mental illness each year.
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'Blood test never checked': Coroner rules Fiona Stanley Hospital failure caused death

Heather McNeill
Published: October 6 2017 - 8:36AM
A failure by doctors at Fiona Stanley Hospital to check an abnormal blood test likely led to the death of patient Jared Olsen, a coroner's report has found. 
Mr Olsen, 41, died in March 2015 after having an adverse reaction to a drug given to him to treat his Crohn's disease. 
State Coroner Ros Fogliani found medical professionals failed to communicate Mr Olsen's "critical" blood test results with one another, instead entering the details in an electronic system, which was missed due to the shift-work nature of hospital staff.
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Missing discharge summary denies GP chance to save patient

Coroner blasts hospital's approach as 'unacceptable'.
6th October 2017
A GP was denied the chance to save his patient’s life after a hospital failed to check if he received a discharge summary requesting that critical blood tests be carried out.
Jared Charles Olsen, 41, had been prescribed prednisolone and the immunosuppressant mercaptopurine by doctors at Perth’s Fiona Stanley Hospital for pain and vomiting arising from his Crohn’s disease.
The WA Coroner’s Court was told a discharge summary detailing the need for follow-up blood tests was mailed to the “attending doctor of Bull Creek Medical Centre (Nominated Primary Healthcare Provider Person)”.
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In search of a tech solution to poor drug compliance

28 September 2017

TECH TALK

Surely in this day and age there’s a fancy tech solution to the age-old problem of people not taking their medications? 
Enter stage left the smart pill bottle, a medication container that glows or makes a noise if a patient fails to open it to take their pills at the prescribed time.
Such smart pill bottles, which are already on the market, are also programmed to send alerts to friends or family if patients miss their meds for two out of three days.
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Cultural Factors affecting Interoperability

Posted on October 4, 2017 by Grahame Grieve
One of the under-appreciated factors that affects how successful you’ll be at ‘interoperability’ (for all the various things that it might mean) is your underlying culture of working with other people – your and their underlying expectations about whether and when you’ll compromise with other people in order to pursue a shared goal.
Culture varies from organization to organization, and from person to person. And even more, it varies from country to country. As I work with different countries, it’s clear that in some countries, it’s harder to get people to to sacrifice their short term personal interests for shared long term communal interests. There’s plenty of research about this – mostly phrased in terms of micro-economics. And it very often comes to down trust (or lack thereof). Trust is a critical success factor for success at compromise and collaboration. And it’s pretty widely observed that the level of trust that people have in institutions of various kinds is reducing at the moment (e.g. 1 2 3).
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Australians made over 2,000 privacy complaints to Commissioner in 2016-17

The Office of the Australian Information Commissioner received 2,494 privacy-related complaints during the 12-month period.
By Asha McLean | October 3, 2017 -- 05:59 GMT (16:59 AEDT) | Topic: Security
Australian Information and Privacy Commissioner Timothy Pilgrim has revealed the number of privacy complaints made to the Office of the Australian Information Commissioner (OAIC) increased this year, with the total reaching 2,494.
Speaking at the iappANZ 2017 Summit in Sydney on Tuesday, Pilgrim said the "upward swing of public interest" highlighted Australia's increasing trust in the OAIC and comfort with their right to lodge such a complaint.
"In the past year, we've seen a 17 percent increase in the number of privacy complaints brought to my office, with a total of 2,494 complaints investigations being received," he said.
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Inside Metro North QLD’s tech consolidation

How the hospital group is using IT to cut costs and improve patient care.
Byron Connolly (CIO) 05 October, 2017 15:25
Metro North's Antony Batrouni: "Our own internal processes were so lacking that if we tried to put them into the cloud, it was going to be a recipe for disaster."
It’s been a tumultuous 10 years for Queensland Health with the fallout from a $1.2 billion payroll disaster – which led to a Commission of Inquiry – doing very little to retain the public’s trust in its technology infrastructure.
Queensland Health’s CEO and CIO Dr Richard Ashby told CIO Australia in July that the department applied one lesson learned from the debacle to all its current and future tech projects: that having applications, hosting, and managed services undertaken by one organisation is very beneficial.
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Dr app: smartphone apps effective for depression

By Australian Hospital + Healthcare Bulletin Staff
Wednesday, 04 October, 2017
While ‘Dr Google’ may not be the safest way to self-diagnose and medicate, research has shown that purpose-built smartphone apps are an effective treatment option for depression.
New Australian-led research has confirmed that smartphone apps could pave the way for safe and accessible interventions for the millions of people around the world diagnosed with this condition.
Depression is the most prevalent mental disorder and a leading cause of global disability, with mental health services worldwide struggling to meet the demand for treatment.1
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3 October 2017

New early warning system for thunderstorm asthma

Posted by Felicity Nelson
The Victorian Government has launched a thunderstorm asthma monitoring system in time for the start of the pollen season.
The system will provide early warnings about thunderstorm asthma to the public from October until the end of December.
It is a key component of the state’s $15 million response to last year’s disastrous season which resulted in nine fatalities.
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E-triage tool improves emergency outcomes

By Australian Hospital + Healthcare Bulletin Staff
Tuesday, 03 October, 2017
An E-triage tool developed in the US is improving detection of patients with critical outcomes and is being used in place of human assessment.
Nurses and doctors typically use the emergency severity index (ESI) during triage to assign a score from Level 1 for patients who are the most critically sick to Level 5 for patients who are the least sick. A patient’s ESI level determines in which area of the emergency department that patient will be seen, places the patient in a queue and influences provider decision-making throughout the patient’s care process.
However, the algorithm can be completely subjective, said Dr Scott Levin, PhD, Associate Professor of Emergency Medicine at the Johns Hopkins University School of Medicine. “Nurses and physicians make a quick assessment on whether the patient can wait solely based on their clinical judgment.” In most cases, researchers say patients are assigned to a Level 3 and not entirely differentiated. “We thought that Level 3 patient group included a large mix of patients who are pretty sick and others who weren’t, and our goal was to determine whether these patients could be sorted out,” he said.
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MyHealth1ST signs significant advertising contract

Will increase Q2 revenue by additional 10-15%
1ST Group Limited (ASX: 1ST), the Australian online health, media and technology group, today announced that a leading eye care products company has signed an agreement to advertise its products to optometry customers on 1ST’s market-leading technology platform, MyHealth1st.com.au.
‘This agreement – which will increase 1ST’s Q2 revenue by an additional 10% and 15% – validates the group’s business model and demonstrates its potential as more health care practices join the MyHeath1ST platform,’ said Klaus Bartosch, 1ST Group’s managing director.
‘Around 60% of independent optometry practices have signed up to use the MyHealth1ST platform to book appointments, and increasingly they are also using our value-adding products such as EasyFeedback and EasyRecalls, for which we charge on a subscription basis or through a usage fee.  The optometrists’ patients provide a highly engaged audience, and we are delighted that a leading eyecare products company has recognised the opportunity to leverage our market presence and unique capabilities.
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Overuse of knee surgeries and fast uptake of telehealth in NSW, report finds

Lynne Minion | 27 Sep 2017
A rapid rise in telehealth and the overuse of keyhole surgery on patients with no prospect of benefit are among the findings of new research into healthcare performance in NSW released today.
The Bureau of Health Information’s annual Healthcare in Focus 2016 report compares NSW’s performance to the health systems of 11 countries and other Australian states and territories, and found that technology can be a benefit and a burden.
“The ageing population and accompanying rise in chronic disease, advances in technology and increasing consumer expectation are among the drivers of increasing healthcare utilisation,” the report says.
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Digital health innovation

QLD Oct 31
Tim Kelsey will provide a briefing on the work of the Australian Digital Health Agency following the approval of the National Digital Health Strategy.

Speakers

Tim Kelsey, Chief Executive Officer, Australian Digital Health Agency

Event overview

Tim Kelsey is Chief Executive of the Australian Digital Health Agency (ADHA) which is responsible for all national digital health services and systems, innovation and clinical quality and safety.
Twelve months in the role at the ADHA Tim will provide a briefing on the work of the Agency following the approval of the National Digital Health Strategy (2018-2022) and expansion of the My Health Record system.
This briefing is by invitation only to CEDA Trustees. Trustees are senior leaders nominated by CEDA member organisations. At CEDA boardroom briefings Trustees hear from an informed, expert guest speaker in a private, small group setting. Invitations to boardroom briefings are a valued benefit of CEDA membership. Chatham House Rule applies.
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Dept of Human Services crowned winner of Government's Cyber War Games

Sara Barker October 03, 2017
The Australian Government’s Department of Human Services was crowned the winner in a cybersecurity competition designed especially for the country’s government agencies last week.
The Government Cyber War Games included five teams, two of which were made up of representatives from multiple departments.
The exercise, Operation First Wave, was designed as a round-robin tournament in which teams attacked and defended a specially-designed cyber range linked to a working replica Lego city.
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IT pros not confident of Aussie data breach prevention: study

Nearly 70% of Australian IT professionals lack confidence in the ability of their organisations to prevent, detect and resolve data breaches, according to a new research report.
And the Ponemon-conducted global study, commissioned by identity services provider Centrify, reveals that 68% of surveyed Australian IT professionals report they do not believe their companies have a high level of ability to prevent breaches.
The study also reveals that 40%of Australian IT practitioners report their organisation had suffered a data breach involving sensitive customer or business information in the past two years, which Centrify says translates to a serious breach exposing extensive confidential data in two in every five organisations.
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New online dementia guide provides practical information

By Laini Bennett
Friday, 29 September, 2017
A new, plain English guide to dementia is now available online.
Designed for people caring for or living with dementia, The Brain: Dementia includes information on types of dementia and their causes, risk factors including genetics and lifestyle choices, and diagnosing and living with dementia.
Dementia is Australia’s second largest killer; more than 400,000 Australians live with dementia and that number is expected to climb to 1.1 million by 2056.
Published by the Queensland Brain Institute in partnership with Alzheimer’s Australia, the 24-page guide is a practical resource for those impacted by dementia.
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NBN inquiry demands drastic refocus of broadband project

By Ry Crozier on Sep 29, 2017 2:34PM

But government unlikely to agree.

A joint federal inquiry into the NBN wants a drastic overhaul of the project, including an independent audit, better information, and a “minimum” of fibre-to-the-curb (FTTC) in the rest of the fixed-line footprint.
The year-long inquiry, which is chaired by government MP Sussan Ley, quietly published its 210-page opus in the shadows of the upcoming Labour Day long weekend. (pdf)
The findings of the inquiry paint an incredibly damaging picture of the national broadband network.
However, it was unclear how many - if any - of the 23 detailed recommendations would ever be put into practice.
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NBN inquiry: joint committee recommends shift to fibre

  • The Australian
  • 4:58PM September 29, 2017

David Swan

A joint federal inquiry into the National Broadband Network has called for an overhaul of the project, recommending the rollout shift to using as much fibre as possible.
The joint standing committee, chaired by government MP Sussan Ley, made 23 recommendations most notably that NBN abandon its current mixed technology rollout plan in favour of a “minimum” of fibre-to-the-curb (FTTC).
Labor’s original NBN plan would have connected every property with fibre to the premise but the Abbott and Turnbull governments nixed that in favour of a multi-technology mix, which the government admits is slower but says is cheaper and faster to roll out.
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NBN report a waste of time

The parliamentary report was full of shocking anecdotes about the NBN rollout.
  • The Australian
  • 7:25AM October 2, 2017

Alan Kohler

What a complete waste of time the parliamentary joint standing committee on the NBN’s first review of Australia’s largest, most important infrastructure project has been.
In fact, the committee itself is a complete waste of time and space.
There were 191 submissions and 15 days of public hearings; they all should have held their breath and stayed at home — using their mobiles.
The majority report, signed by 12 ALP and minor party MPs, concluded that the NBN was a dreadful mess and made 23 recommendations to improve it.
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When it comes to the NBN, we keep having the same conversations over and over

October 4, 2017 5.36pm AEDT

Author David Glance

Director of UWA Centre for Software Practice, University of Western Australia
The Joint Standing Committee on the National Broadband Network (NBN) released its first report on Friday, just as most people on the east coast of Australia headed into a long weekend, complete with two sporting grand finals.
The release on a Friday afternoon, sometimes referred to by the media as the “Friday news dump”, is generally what governments do when they want the published report to gather dust.
In fact, its hundreds of pages actually included two reports from the one committee. The dissenting report, supported by its Liberal Party members, including the committee’s chair Sussan Ley, contradict many of the conclusions of the first, which was backed by the Labor Party members and Australian Greens, among others.
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Life in the slow lane: Australia has slower internet than Kenya

Angus Whitley
Published: October 4 2017 - 4:13PM
The $49 billion National Broadband Network was meant to spearhead a digital revolution. Instead, the botched project risks becoming a poster child for government mismanagement.
Australia's biggest-ever infrastructure investment has turned into a political football, plagued by cost overruns and construction delays.
With the network years behind the original schedule and only about half finished, Australia has slumped to 50th place on a global ladder of internet speeds, behind Kenya and a string of former Soviet bloc nations.
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Even govt MPs are now criticising NBN, says Labor

The Labor Party's communications spokesperson Michelle Rowland has taken aim at Prime Minister Malcolm Turnbull over the national broadband network rollout, pointing out that criticism of the network is now coming from his own side of politics.
Rowland pointed to statements made by Nationals Mallee MP Andrew Broad and former Liberal MP Fiona Scott, both of which were critical of the policy adopted by the government for the NBN rollout and followed by the NBN Co.
Broad, the lone Nationals MP on the joint standing committee on the National Broadband Network, gave an interview to The Guardian Australia in which he was fairly scathing about the rollout.
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Enjoy!
David.

Sunday, October 08, 2017

This Is The Second Time The Government Has Tried To Grab Largely Unfettered Access To The Information In The myHR. Why Did The First Attempt Fail I Wonder?

I first alerted the reader to proposals around the Secondary Use Of The myHR Data here:
This was late August 2016 – and after a bit it all went quiet!
This appeared a few days ago as the project ramped up – and was mentioned in the blog last week:

Public input sought on use of health record data

De-identified My Health Record data could potentially be used by researchers
Rohan Pearce (Computerworld) 06 October, 2017 07:00
A public consultation has begun on potential uses of de-identified data drawn from Australia’s national e-health record system.
The government in its May budget set aside $374.2 million for the expansion of the My Health Record system as it shifts to an ‘opt-out’ model. Under the new model, a health record will be created for every Australian citizen unless they request otherwise. (Once a record is created it can’t be deleted, just rendered inaccessible.)
Some 5 million Australians already have records.
Specialist consultancy HealthConsult has been retained by the Department of Health to develop a framework “for the secondary use of data held in the My Health Record system for research, policy, system use, quality improvement and evaluation activities”.
Secondary use is any use of the system for purposes other than providing healthcare to an individual; for example, research, policy analysis and work on improving health services.
Under My Health Records Act 2012 one of the duties the operator of the eHealth record system — the Australian Digital Health Agency — is “to prepare and provide de‑identified data for research or public health purposes”.
…..
The government also faced questions about its management of Medicare data after a service offering the Medicare number of any individual was unearthed.
HealthConsult is accepting submissions until 17 November. The consultation paper is available online.
More here:
Usefully HealthConsult have provided a summary of the issues they plan to consult on and address:

Secondary use of My Health Record data:

A ‘plain English’ guide to the Public Consultation Paper

Purpose of this document

The Australian Government is consulting with the public about how data in the My Health Record system may be used in future. This is your chance to have your say. The Department of Health is leading the public consultation and has prepared this guide to the Public Consultation Paper – Development of the framework for the secondary use of My Health Record system data (‘the Consultation Paper’).

What is My Health Record?

The My Health Record system allows you to share your important health information (like your medical conditions, treatments, allergies, and details about medicines) securely online with registered healthcare providers – from anywhere, at any time. It can include information from Medicare (like the last time you went to see your doctor), prescription data (what medicines you take) and test results (like blood tests or x-ray reports). It can also hold other documents uploaded by your GP (like letters to specialists) and hospitals can upload discharge summaries and follow-up care information.

What is ‘secondary use’?

‘Secondary use of data’ is when information is used for a purpose other than that for which it was originally collected. The primary purpose of My Health Record is to assist your doctors and healthcare providers with their clinical decision-making – so all your doctors and healthcare providers can look at the same information about your health. This way, everyone can work together in one secure digital environment to better coordinate your care, even when you can’t speak, like in a medical emergency. For the purposes of these public consultations, ‘secondary use’ is defined as “using the information in the My Health Record system for purposes other than the provision of direct healthcare to the individual person, which is considered to be the primary use.”

Why use My Health Record data for secondary purposes?

Over 5 million Australians now have a My Health Record. Most doctors and hospitals in Australia are connected to the My Health Record system, which currently holds over 3 million clinical records and 12 million prescription and dispense documents. As the volume of information in My Health Record grows and more Australians get a My Health Record, it may become one of Australia’s most comprehensive health data resources. The Framework will build upon existing privacy laws to enable secondary use of health data for the public good and the use of data solely for commercial and non-health related purposes is considered out of scope.
There are many existing public and government health datasets being used for secondary purposes. It is envisaged that the Framework will address overlap between commercial and health related uses of data. For example, use of data for development of pharmaceuticals could be considered both a health related and commercial purpose.

What arrangements are currently in place?

Currently, data in the My Health Record system is not used for research, policy and planning purposes, although legislation is in place to enable it. Under the My Health Records Act 2012, one of the functions of the Australian Digital Health Agency as the system operator for the My Health Record is “to prepare and provide de-identified data for research and public health purposes.” In addition, the legislation states that health information in the My Health Record system may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient.
The Privacy Act 1988 also applies to the My Health Record in respect of consumers’ health information, for example, the Australian Privacy Principles Guidelines explicitly states that in order for you to give consent for anything, you must be adequately informed beforehand, you must give it voluntarily, your consent must be current and specific, and you must have the capacity to understand and communicate it.  Consent is defined as “express or implied consent.”
In 2018, all Australians will have a My Health Record created for them unless they choose not to have one.  This means that people can exercise a choice to opt out of the My Health Record system. If a person does not opt-out, their consent is implied.
Before My Health Record data can be used for secondary purposes, a Framework is required that incorporates such existing rules. The Framework must reflect the expectations of all Australians about how the health information held in the system should, or could, be used. The release of the Consultation Paper marks the start of a consultation process for the government to find out what Australians want the Framework to say. It gives people the opportunity to provide input about who should be able to access My Health Record data, for what purposes and what the oversight arrangements should be.

What are the benefits of secondary use of data?

In the future, the secondary use of My Health Record data is very likely to provide important insights into the effectiveness and safety of medical treatments and clinical care across Australia’s health system.
The folate story
A good example of evidence-based policy-making as a result of secondary data use occurred in 1989 when Western Australian researchers linked health data from different registries. The researchers determined that the inclusion of folic acid in expectant mothers’ diets prevents neural tube defects in their babies. This finding was followed by education campaigns to encourage women to eat more folate enriched foods or take folate supplements during pregnancy. In 2007, all Australian governments (Commonwealth, State and Territory) agreed to introduce the compulsory enrichment of bread‑making flour with folate, which reduces incidents of spina bifida and other neural tube defects in children. Since this measure was introduced there has been a significant (14.4%) overall decrease in the rate of neural tube defects in Australia. The rate of neural tube defects decreased by almost 55% among teenagers and by 74% for Aboriginal and Torres Strait Islander women. 
Other likely benefits
Secondary use of My Health Record data could also occur when new treatments, like new drugs, are offered to Australians for diseases like diabetes or cancer. Identifiable information in My Health Record may be securely linked to quickly locate people who may want to be part of clinical trials.
Researchers involved in clinical trials may also request permission to link My Health Record data to other databases to help investigations into subsequent hospitalisations, diseases and death.

What about privacy and security risks?

My Health Record has operated successfully, securely and with millions of participants for almost five years. The system has security similar to that of a bank and is built on proven technology. It has controls in place to detect and mitigate denial of service attacks and hacking attempts.
Typically in Australia, agencies that hold and manage data and information, like the Australian Institute of Health and Welfare and the Australian Bureau of Statistics, play a central role in privacy protection and use of data for monitoring and research. Their duties include undertaking activities to maximise the value of the data they hold, while minimising risks to security and privacy. The Framework will be developed with a view to defining a role for a single accountable authority to be responsible for secondary uses of My Health Record data.
In 2016, new participation arrangements for My Health Record were trialled in several parts of Australia. Residents in these communities had a My Health Record created for them unless they chose not to have one. As part of these trials, an independent evaluator found that once the majority of participants understood the My Health Record system, they agreed that the benefits of having a record “far outweigh the possibility of risks to privacy, confidentiality and security.”

New participation arrangements in 2018

The Government will make My Health Record participation ‘opt-out’ by the end of 2018. This means that we will create a My Health Record for you if you don’t already have one unless you tell us not to. Once you have a My Health Record you can cancel it at any time. Read the My Health Record Privacy Policy for more information.
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This paper and more detailed information are available from this link:
Besides making the obvious points that the ‘Folate Story’ was nailed without the myHR almost 30 years ago and that the myHR has already had breaches as reported by the OAIC a month or so ago this is a useful summary.
Writing a year ago or so I commented:
“There are a range of issues I see that need to be resolved here:
First, given the myHR is presently a large pile of documents (many .pdfs) just how is the data to be extracted and made useable? (an example I know of is that many of the PBS records use trade names rather than standardised names for comparability)
Second how certain can we be the records will be properly anonymised and not be re-linkable?
Third what will be the involvement of properly constituted ethics committees and data anonymization experts in allowing this data access?
Fourth will citizens be told if their data is being utilised and have the right to see the data before it is used so they can deny access if they are concerned.
Fifth, given NEHTA’s and DoH’s track record of ‘pseudo consultation’ where pretty much all input is just ignored what confidence can we all have what is done will be in accord with sensible requests.
To me the threshold question will be ‘Just who does this access and research ultimately benefit?’ If the answer is the patients or citizens there may be a case for this – otherwise I, for one, will be pretty sceptical!”
I see no reason to change those comments and with comments related to unconsented and commercial use of the data I think we need to move carefully and cautiously rather than have a blow up and totally destroy any remaining confidence in the myHR.
This is a complex topic and I am interested in what readers think and if I think I can say something useful I will plan to develop a submission.
Comments more than welcome!
David.

AusHealthIT Poll Number 391 – Results – 8st October, 2017.

Here are the results of the poll.

After Now 15 Months, Do You Believe The ADHA Is Headed In The Right Direction Overall?


Yes 0% (0)

No 94% (116)

Too Early To Tell 2% (3)

I Have No Idea 3% (4)

Total votes: 123

What an amazing vote! Seems to me the something must be pretty off the rails to get a result like this. Not even the usual loyal ADHA employees, who we know read here, bother to offer support.

Any insights welcome as a comment, as usual, especially regarding what might be done to fix things?

A great turnout of votes!

Again, many, many thanks to all those that voted!

David.