Thursday, August 17, 2017

The Macro View – Health, Financial And Political News Relevant To E-Health And The Health Sector In General.

August 17, 2017 Edition.
On the overseas front we now see President Trump not only beating up on North Korea but now thinking about having a go at Venezuela for some bizarre reason.
Trump seems to have developed a taste for international meddling because he is having so little domestic success!
One gets the feeling this may not end as well as we hope! Time will tell.
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In Australia Labor continues to lead in the polls and letting same sex couples marry is causing havoc in the Coalition to the extent we are now having a postal plebiscite – subject to the High Court agreeing. Energy policy, tax policy and a few others are also seemingly up in the air.

Thursday Update - Trump has gone of the reservation backing Neo-Nazis etc. and Pauline Hanson has been wandering around the Senate in a burqa. The world seems to be adrift.
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Here are a few other things I have noticed.
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National Budget Issues.

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  • Updated Aug 6 2017 at 8:54 PM

Cost of living, 'fake' politicians drive voter disenchantment: research

House prices are by far the biggest concern among swing voters in Australia's two largest cities according extensive focus group research which also reveals widespread disillusionment with federal political parties and their leaders.
It finds a general sense of disappointment with Malcolm Turnbull, a lack of trust and belief in Bill Shorten, and anger against Tony Abbott who was generally described as a "sook" and a "spoiler".
This extended beyond the major parties with no-one in the four groups tested being able to name the Greens leader, Richard Di Natale.
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Bill Shorten's argument on inequality isn't new, but it could prove effective

Nick O'Malley
Published: August 7 2017 - 12:15AM
For over a year, Bill Shorten has been preparing to fight an election campaign based on his argument that inequality – and attendant wage stagnation – has reached the point in Australia that it is not only hurting middle-class families, but threatening the nation's social fabric.
Such an argument is not new for opposition parties, particularly those of the left. Leading the Labor Party, Mark Latham once startlingly promised to "ease the squeeze".
But the political weapon Shorten has been forging may prove to be particularly effective in the current environment, not only because he plans to deploy it against the richest man ever to serve as Australia's prime minister, but because it is fortified by a growing international consensus in economic theory.
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Pressure for royal commission rises on CBA laundering scandal

Clancy Yeates
Published: August 7 2017 - 12:00AM
Prime Minister Malcolm Turnbull faces a new round of pressure for a royal commission into the banks after last week's explosive claims the Commonwealth Bank broke anti-money laundering laws, allegations Labor says are "extremely serious and deeply concerning".
The step-up in Labor's rhetoric came as powerful cross-bench senator Nick Xenophon said a bank royal commission was "all but inevitable" in the next parliamentary term at the latest, and pushed for tougher penalties for reckless bankers.
Amid the mounting political pressure and a sell-off in CBA shares before its results this week, chief executive Ian Narev on Sunday broke his public silence, seeking to downplay the push for a royal commission.
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Fairfax-Ipsos focus groups: Turnbull and Shorten have reason to fear the depth of discontent

Tony Wright
Published: August 7 2017 - 12:00AM
Crawling west in Sydney along motorways and tunnels crammed with bellowing trucks, through suburbs where the most modest houses carry price tags of more than $1 million, it wasn't difficult to predict frustration lay behind front doors.
We expected something similar in suburban Melbourne, the nation's second-largest but fastest-growing city, with fast-rising house prices and clogged roads, too.
But it was worse than frustration, our research found: Prime Minister Malcolm Turnbull and Opposition Leader Bill Shorten have reason to fear the depth of discontent that has taken root in both suburban Sydney and Melbourne.
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Fairfax-Ipsos focus groups: voters most angry about housing affordability

Peter Hartcher
Published: August 6 2017 - 11:41PM
Unaffordable housing has surged to the top of the list of undecided voters' concerns in western Sydney, trumping the long-standing priorities of health, education and jobs, according to new focus group research.
And while the problem angered younger voters unable to buy a home, it also troubled an older generation who feared for their children's future.
Foreign investors and immigrants were blamed; neither of the main political parties were seen as having the solution.
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Bill Shorten's 'inequality' pitch appeals to the neglected, vulnerable worker

Mark Kenny
Published: August 6 2017 - 12:00AM
It stands to reason that in the absence of credible solutions to persistent problems, unhappy voters will seek alternatives, look for someone to blame. It's not rocket science.
Despite the practical limits to what governments can do (outside of a mining boom) they must at least offer hope – a believable prospect of better times ahead, and a sense that contemporary struggles will lighten.
Sustained wage stagnation which is as endemic since the GFC as the original crisis, coupled with rising energy and housing costs, are however, testing these limits. All the more so, when politicians' boast of good times, and of economic policy settings that are just right.
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Low wage growth is what the Coalition wanted

Peter Martin
Published: August 6 2017 - 12:01AM
It's better sometimes when we don't get to touch our dreams.
The incoming Coalition government wanted low wage growth, badly.
Within weeks of taking office in 2013 employment minister Eric Abetz upbraided "weak-kneed employers" whom he said were unable to "just say no".
They were all for the carrot, but saw no role for the stick.
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The time bomb in the Australian electorate the major parties can't afford to ignore

Peter Hartcher
Published: August 8 2017 - 12:05AM
What do Australians think of Donald Trump's presidency so far? Based on focus groups of undecided voters in marginal seats in Melbourne and western Sydney, we can say three things. First, there's scant approval of the way he's doing his job, and only one voter out of 30 thought he was accomplishing anything. "I don't agree with what he has done," said an older woman in Melbourne, "but he has done stuff."   And even that one, when challenged by others in her group to name an achievement, could not. He'd built a wall, she said, but the others had to let her down with the news that he hadn't, not yet at least.
Second, there's a fair bit of apprehension. "He's going to get us all bombed," said a Sydney woman who described herself as an Avon lady.
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Malcolm Turnbull has little chance of keeping energy bills under control

Ross Gittins
Published: August 9 2017 - 8:06AM
It's never my policy to feel sorry for any politician, so let's just say I wouldn't like to be in Malcolm Turnbull's shoes when he meets the electricity retailers he's summoned to Canberra on Wednesday.
His hope is to persuade them to do more to help their customers find the best prices on offer, so that any savings customers make reduce, to some extent, the further big price rises that are on the way.
Trouble is, it's long been the practice of many big businesses – telcos, internet service providers, electricity retailers – to make it as hard as possible for their household customers to find the "plan" that meets their needs most economically, and also to take advantage of any trusting customer on a more expensive plan than they need.
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Here are 3 billion more reasons to vote 'yes' to same sex marriage

Jessica Irvine
Published: August 12 2017 - 11:45PM
Spring is coming. Remember that, folks, and take heart. Yes, the winter of 2017 has seemed bitterly cold, and dark, at times. White-walkers didn't invade, as feared by Game of Thrones fans, but the vengeful sprit of a Trump presidency seemed to cast a shadow across the world, culminating in this week's threat of "fire and fury" against Pyongyang.
And now we face an emotionally fraught and potentially divisive postal vote – of dubious constitutional and statistical validity – to attempt to resolve the question of same-sex marriage. Many will feel that the extension of a basic human right to all citizens is reason enough for a "yes" vote in the upcoming "voluntary survey". But for any still undecided, there is another significant – and entirely selfish – reason to vote yes.
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Health Budget Issues.

Medibank calls for patient consent, fee disclosure

  • The Australian
  • 12:00AM August 7, 2017

Sarah-Jane Tasker

Medibank is calling on the Turnbull government to increase transparency in the healthcare system and force providers to publicly disclose fees and introduce patient consent on costs before non-emergency procedures.
The health insurance giant said greater transparency would significantly increase competitive pressures in the health system, put downward pressure on prices and lead to better results.
Medibank, in its submission to a senate inquiry on private health insurance, has argued that there are no requirements for providers to obtain informed financial consent from consumers and there was little, if any, price transparency for consumers or referring doctors.
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Public scrutiny mooted for private hospitals

  • The Australian
  • 12:00AM August 7, 2017

Sean Parnell

Private hospitals are set to come under the same scrutiny as public hospitals, and be required to repor­t their performance at the same time, after health ministers recognised a need to align quality benchmarks and transparency across the system.
As several states outsource elective surgery to the private sector, Queensland Health Minister Cameron Dick recommended on Friday that the Council of Aust­ralian Governments Health Council ensures consistency in per­formance reporting.
A discussion paper released by the Queensland government noted the “high level of variance in regard to what and how indi­c­ators are presently reported in Queensland, and in other Aus­t­ralian and international juris­dictions, (which) makes it difficult for stakeholders to meaningfully use this information”.
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High cost puts many off consulting medical specialists

John Collett
Published: August 9 2017 - 12:15AM
Five years ago Debra Balhatchet underwent surgery in a private hospital to remove a life-threatening tumour. Despite having top-tier private medical cover, the surgery cost her $10,000.
Debra, 38, from the Gold Coast, says she would have opted for a public hospital if she had been made aware of the "gap" expenses that she would incur by going private.
She recalls the first question the radiologist asked her immediately after examining the scan was whether she had private medical cover.
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International Issues.

The decline in America leadership predates Donald Trump

Tom Switzer
Published: August 6 2017 - 12:00AM
The other day an American friend told me something rather disconcerting: when he travels to Europe later this year, he expects to be treated like "a visitor from a planet that has been taken over by wild beasts". 
Why? Because Donald Trump – with all the chronic chaos and plain weirdness he brings to the White House – has dealt a huge blow to America's global standing.
And yet my friend, like many friends of America, takes solace in assuming Trump is an aberration. Normal programming will resume, they say, whenever the 71-year-old buffoon leaves office and a more conventional president reaffirms American global leadership that upholds the multilateral rules-based order.
Perhaps. But what if the decline of US prestige and influence that has accompanied Washington's freak show is a sign of things to come? What if America's crisis of confidence goes beyond Trump?
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That whoosh? It's the Great Chinese Property Pullback

Nisha Gopalan
Published: August 8 2017 - 10:03AM
That whoosh you just heard? It's Chinese money pulling back from property in London to Sydney to New York.
Capital centres globally should brace for tumbling real-estate prices as Beijing manages to do what Brexit and higher interest rates haven't.
Reflecting tighter regulations, China overseas direct property investment could drop 84 per cent to $US1.7 billion ($2.15 billion) this year and about another 15 per cent to $US1.4 billion in 2018, according to Morgan Stanley.
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Emmanuel Macron's honeymoon comes to a halt

Adam Nossiter
Published: August 8 2017 - 1:45PM
Paris: President Emmanuel Macron, who upended France's political establishment with his election in May, is breaking ground again, but in an unwelcome way: a rapid and nearly unequalled drop in the polls.
The young president lost 10 points in one month in one poll, 8 in another and 7 in a third. Not since the first months of Jacques Chirac in the mid-1990s has any president fallen so far so fast.
Macron, at the head of a fledgling political movement, marked a victory that was always as tenuous as it was momentous. A former investment banker, he bested France's traditional political parties and fashioned himself as something of a centrist, giving both left and right reason to support him, but also ample room to regard him with suspicion.
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North Korea threatens missile strike after reports it has nuclear warhead

August 9, 20178:58am

North Korea will be met with 'fire and fury' if threatens again: Trump

Staff writers, AP, AFPNews Corp Australia Network
NORTH Korea has retaliated to Donald Trump’s warning of “fire and fury like the world has never seen” by threatening a missile strike on US Pacific territory Guam.
The reclusive state announced it was “carefully examining” a plan to attack Guam, just hours after the US President issued his apocalyptic warning following reports North Korea had produced a missile-ready nuke.
In a statement released by North Korea’s state-run KCNA news agency today, a spokesman for the Korean People’s Army said the strike plan would be “put into practice in a multi-current and consecutive way any moment” once leader Kim Jong-un made a decision.
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Foreign Minister Julie Bishop warns North Korea confrontation could escalate, calls for calm

Peter Hartcher
Published: August 9 2017 - 1:21PM
The North Korean confrontation could escalate and Australia is within range of any intercontinental ballistic missiles, but Australia is not a primary target, Foreign Affairs Minister Julie Bishop says.
"We are not a primary target but we have a deep interest in seeing this resolved," Ms Bishop told Fairfax Media in an interview. "It's evident that it could ramp up into a more serious conflict."
She called on all parties to step back from the escalating crisis. She declined to comment on the rhetoric used by US President Donald Trump, who said on Tuesday US time that North Korean threats would be met with "fire and fury like the world has never seen". 
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Market jitters over Donald Trump's 'fire and fury' threat are justified

Ambrose Evans-Pritchard
Published: August 10 2017 - 8:45AM
The line dividing North and South Korea was drawn by two young colonels in the middle of the night on August 11, 1945.  They were thrust into a room, given a map, and told to come up with a solution within half an hour.
The Koreans were not consulted, and nor were the British or the Chinese. US military planners were focused solely on the surrender of Japan and the rush to pre-empt the Soviet Red Army coming down from the North.
One of the colonels happened to be Dean Rusk, a Rhodes Scholar who would become US secretary of state in the 1960s. He drew the line through the 38th Parallel because it "would place the capital city in the American zone".
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Donald Trump's 'fire and fury' threat to North Korea was improvised

Peter Baker and Glenn Thrush
Published: August 10 2017 - 2:52AM
President Donald Trump delivered his "fire and fury" threat to North Korea on Tuesday with arms folded, jaw set and eyes flitting on what appeared to be a single page of talking points set before him on the conference table at his New Jersey golf resort.
The piece of paper, as it turned out, was a fact sheet on the opioid crisis he had come to talk about, and his ominous warning to Pyongyang was entirely improvised, according to several people with direct knowledge of what unfolded. In discussions with advisers beforehand, he had not run the specific language by them.
The inflammatory words quickly escalated the confrontation with North Korea to a new, alarming level and were followed shortly by a new threat from North Korea to obliterate a US air base on Guam. In the hours since, the president's advisers have sought to calm the situation, with Secretary of State Rex Tillerson assuring Americans that they "should sleep at night" without worrying about an imminent war.
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Tony Abbott calls for Australia to urgently consider missile defence shield

Peter Hartcher
Published: August 11 2017 - 12:15AM
Tony Abbott has called for Australia urgently to consider a missile defence shield to protect against attack by nuclear-armed North Korea.
This means that Australia's two most recent former leaders – one Labor and one Liberal – have now made such a call in the last four weeks.
Australia has no defence against intercontinental ballistic missiles. The government has yet to indicate any interest in acquiring one.
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Donald Trump says language on North Korea might not be tough enough

Published: August 11 2017 - 5:35AM
Bedminster, NJ: President Donald Trump on Thursday escalated his rhetoric on North Korea, saying his "fire and fury" comment might not be "tough enough."
"Maybe that statement wasn't tough enough," Trump told reporters as he prepared to meet with top national security advisers. "If anything, that statement may not be tough enough." 
Trump would not say whether he is considering a preemptive strike on North Korea, and while he said he was open to negotiating with Pyongyang, he said talks over the years had done little to halt the country's nuclear program.
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North Korean shouting match could provoke Trump into over-reacting

Ambrose Evans-Pritchard
Published: August 11 2017 - 8:31AM
The line dividing North and South Korea was drawn by two young colonels in the middle of the night on August 11, 1945. They were thrust into a room, given a map, and told to come up with a solution within half an hour. The Koreans were not consulted, and nor were the British or the Chinese. US military planners were focused solely on the surrender of Japan and the rush to pre-empt the Soviet Red Army coming down from the North.
One of the colonels happened to be Dean Rusk, a Rhodes scholar who would become US secretary of state in the 1960s. He drew the line through the 38th Parallel because it "would place the capital city in the American zone".
Rusk feared that Seoul was indefensible, and he was right: the city was overrun within days when the North attacked in the Korean War. His fateful line is why so much of this great metropolitan area of 24 million people is today within artillery and rocket range, regularly threatened with a "sea of fire" by the Communist Kim dynasty.
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Trump steps up threats on North Korea

  • The Australian
  • 10:00AM August 11, 2017

Cameron Stewart

A defiant Donald Trump has further stepped up his attack on North Korea, warning Pyongyang “isn’t getting away with” its threats to launch missiles at Guam.
Speaking after a security meeting, the US President told reporters Kim Jong-un had been “disrespecting” the US with its nuclear missile threats.
“Let’s see what he does with Guam. If he does something, it will be an event the likes of which no one has seen, what will happen in North Korea,” he said.
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We will enact ANZUS over North Korea: Turnbull

  • The Australian
  • 9:13AM August 11, 2017

Rosie Lewis

Malcolm Turnbull says Australia would enact the ANZUS Treaty and “come to the aid of the United States” if North Korea launched an attack against the western superpower.
The Prime Minister’s declaration of support follows escalating threats between America and North Korea, who earlier this week threatened to launch a multi-missile strike in the waters off the US Pacific territory of Guam.
“The United States has no stronger ally than Australia. We have an ANZUS agreement and if there is an attack on Australia or the United States then each of us will come to the other’s aid,” Mr Turnbull told 3AW radio.
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Paul Keating: North Korea could collapse if it gives up nuclear weapons

James Massola, Fergus Hunter
Published: August 12 2017 - 10:03AM
Paul Keating has warned that North Korea will never abandon its nuclear weapon program and that this new reality will have to be addressed in the same way as the west sought to contain the former Soviet Union.
The former prime minister, one of Australia's most-respected foreign policy thinkers and a strong advocate for a more independent foreign policy, has disagreed strongly with the language and approach being taken by the US President Donald Trump towards the rogue state.
On Friday, US President Donald Trump reiterated his bellicose warning to North Korea, suggesting that his threat to unleash "fire and fury" may not have gone far enough.
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Donald Trump threatens Venezuela with 'military option'

James Oliphant
Published: August 12 2017 - 9:57AM
Bedminster, NJ: US President Donald Trump threatened military intervention in Venezuela, a surprise escalation in Washington's response to Venezuela's political crisis.
Venezuela has appeared to slide toward a more volatile stage of unrest in recent days, with anti-government forces looting weapons from a military base after the installation of an all-powerful new legislative body.
"The people are suffering and they are dying. We have many options for Venezuela including a possible military option if necessary," Trump told reporters on Friday.
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August 12 2017 - 11:18AM

US allies, adversaries urge caution on North Korea

London: World leaders expressed alarm at the bellicose language emanating from North Korea and the United States, but also some support for President Donald Trump, as they sought to allay their citizens' fears of a nuclear war on the Korean Peninsula.
"I am convinced that a verbal escalation will not contribute to a resolution of the conflict," Chancellor Angela Merkel of Germany told journalists in Berlin. "I also see no military resolution to the conflict."
Any North Korean attack on the United States will be met by aid and support from Australia, says Prime Minister Malcolm Turnbull.
Russia's foreign minister, Sergey Lavrov, said that Moscow was "very alarmed" by talk of pre-emptive military action by the United States. "Unfortunately, the rhetoric in Washington and Pyongyang is now starting to go over the top," Lavrov said. "We still hope and believe that common sense will prevail."
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US military is 'locked and loaded': Trump's latest warning to North Korea

John Wagner
Published: August 12 2017 - 12:38PM
Washington: US President Donald Trump issued a new threat to North Korea, saying the US military was "locked and loaded" as Pyongyang accused him of driving the Korean peninsula to the brink of nuclear war and world powers expressed alarm.
The Pentagon said the United States and South Korea would proceed as planned with a joint military exercise in 10 days, an action sure to further antagonise North Korea.
Trump, vacationing at his Bedminster, New Jersey, golf resort, again referred to North Korea's leader in his latest bellicose remarks Friday evening Australia time. "Military solutions are now fully in place, locked and loaded, should North Korea act unwisely," he wrote on Twitter. "Hopefully Kim Jong Un [sic] will find another path!"
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I look forward to comments on all this!
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David.

This NBN Is Really Just A Joke - And Worse It Seems To Cost Way Too Much!

This appeared last week:

Australia ranks 55th in broadband download speed tests

A test of broadband speeds across 189 countries has found that Australia ranks 55th, well behind New Zealand (30th) and miles behind table-topper Singapore.
The table was compiled by British broadband advice site Cable.co.uk from more than 63 million broadband speed tests.
The data collection was done across 12 months ending on 10 May, by M-Lab, a partnership between New America's Open Technology Institute, Google Open Source Research, Princeton University's PlanetLab, and other partners.
Speed was measured by how long one took to download a 7.5GB film. The throughput of a single TCP connection was measured, attempting to transfer as much data as possible for at least 10 seconds. 

"This data set has been queried for tests run in the year to 10 May 2017; in order to compile a league table of download speeds for countries tests have been performed by at least 100 unique IP addresses," according to the outline of the methodology.
In Singapore it took 18 minutes and 34 seconds for a mean download speed of 55.13Mbps.
By contrast in Australia, it took two hours, 12 minutes and 57 seconds to download the film, with the mean speed being 7.7Mbps.
More here:
No wonder we see articles like this:

How I learned to stop worrying and love my broadband, despite the NBN

Updated Aug 7 2017 at 11:00 AM
Is the NBN getting you down?
Are you awaking irritable and still tired each morning, afraid that Malcolm Turnbull's version of the National Broadband Network has condemned you, your children and possibly your children's children to broadband speeds that are marginal at best right now, but that will lag far behind the rest of the world in years to come?
Lord knows the NBN has been getting me down, and I don't even have it yet.
Ever since the NBN appeared in my suburb, my already very sketchy broadband speed has sunk to a 10-year low, especially for uploads. Many of the smart home gadgets in my house, ranging from Google Home to security cameras, now refuse to work, not all of the time, but all too often.
NBN Co insists it's not its fault, and that my ISP must be to blame. My ISP, which sent out a technician who couldn't find anything wrong with my connection, suggested that it may not be a coincidence that the connection went dodgy soon after the NBN took over the local backbone.
Like many Australians, I'm left standing between two fingers pointing at each other, which in effect means they're pointing at me to fix it.
So, in the hope that some of you might find this useful, here's what I've done . . .

Toxic mix

In the natural order of things, fixed broadband should always be faster than wireless broadband. That's just the fact we've all grown up with.
But such is the shemozzle that is the NBN, a toxic mix of old technologies and politicised cost structures that encourage ISPs to under-service their customers, that wireless broadband is currently faster than the NBN.
On Telstra's 4GX network we've seen download speeds of 350 megabits per second, more than triple what the NBN is making available in my suburb, and upload speeds of 50mbps, 25 per cent higher than the best the NBN has to offer (presuming you even get that speed when you pay for it).
I mention this because there exists home Wi-Fi routers, such as the brilliant Synology RT2600AC, that let you use a 4G wireless connection in conjunction with your fixed broadband connection, to smooth over the NBN's rough edges.
I've plugged an old 4G phone into the Synology's USB port, set the phone so it shares its internet connection over USB (a setting typically known as "USB tethering"), and then told the Synology to use that wireless connection whenever the fixed broadband connection drops out.
If that's too dangerous for you (given the cost of wireless broadband, and the fact that just a few hours of viewing Stan on your TV could blow your monthly 4G limit), you can also set the Synology so it only uses the 4G connection for certain devices and not others, depending on their IP address.
You can set it so the TV always uses the fixed broadband connection, for instance, but your work laptop always gets routed over the 4G connection, so you can still get your work done even on a Friday night when the NBN has ground to a standstill.
More here:
There is nothing to be said and worse I had a note from Optus I was going to be dragooned into the monster in November. Bummer!
David.

Wednesday, August 16, 2017

A Conversation Article Raises The Interesting Issue Of The Fate Of Your Health Information When You Move On.

This appeared last week:

Our healthcare records outlive us. It’s time to decide what happens to the data once we’re gone.

August 7, 2017 6.12am AEST

Author: Jon Cornwall

Senior Lecturer, Faculty of Health, Victoria University of Wellington
Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty.
Data about patients is a vital cog in the provision of efficient health services.
Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.
Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. In both of these cases, when you died your records were either shredded or erased, depending on the technology.
But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction.
Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value.
This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment.
These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed.
Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create.
So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country.
Yet the lines become easily blurred.
Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used?
How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer.

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent.
As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear.
In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for.
Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.
It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics.
Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved.
The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects.
She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted.
Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility.
At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world.
It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised.
Healthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised.
You can view the original article here:
This article raises a series of fascinating issues – especially about the protection of your data after you die when the information may be of concern to or embarrassing to your relatives or progeny.
The fate of the information in your myHR when you go would be interesting to have spelt out.
Well worth a browse.
David.