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."

Friday, August 19, 2016

Enrico Coiera Blogs On Pokémon and Health. A Fun Read.

This appeared a while ago:

#GottaCureEmAll – Pokemon GO teaches healthcare a big lesson

August 1, 2016
If we can believe what we are seeing, Pokemon GO is the world’s most effective, and most widespread, population weight loss intervention. Already, its users spend more time on the game than on other wildly popular mainstream social media platforms like Facebook, Snapchat and Twitter. Over the space of a few weeks, it has prompted millions of children and teens to get off the couch, turn off Netflix, leave the laptop in their bedroom, and walk out into the world to breath the fresh air. More than a few adults have done the same.
Healthcare should pay attention. While healthcare researchers are slowly coming to grips with ‘new’ ideas like gamification and social media to defeat obesity, the game industry has jumped the queue and may have already done it. Silicon valley has drawn down on its deep well of expertise in building large and complex software systems, and in embedding such systems into the real world. They have drawn on their deep experience with and understanding of the psychology of online social media, of what makes games ‘fun’, and what makes them ‘sticky’.
I doubt if Niantic, the Pokemon company, looked to randomized clinical trials to design and implement their system. The world of software moves too fast for that. It has an engineering culture of fail early, fail often. And because of that, it has as much right as scientists to claim that it is driven by experimentation and data, or as the philosopher Karl Popper would have said, conjecture and refutation.
For those who have not been drawn in to the world of Pokemon Go, it may be hard to understand what the fuss is all about. It is just another time-wasting, obsession inducing computer game. Yes it is interesting that it uses augmented reality and your physical location as part of the gameplay, but so what? People just walk around collecting different characters, oblivious to what is happening around them. The end result is a different kind of walking screen-time zombie, with the added risk of walking into the traffic or driving into a wall as you play the game.
There is another way to look at it. Firstly, irrespective of the game ‘medium’, the real world ‘message’ is that people are more than happy to exercise, and to engage with others in the real world, with the right motivation. For younger generations who have grown up in a world that is digitally augmented, the digital-social complex is the way to access their lives. Jogging with a fitbit is probably compelling for those who already run or are motivated to exercise. Pokemon GO does something more miraculous. It causes the Lazarus generation to rise up, and to move.
Pokemon GO makes walking the basic currency of the game. If you chance upon the eggs of Pokemon creatures, the only way to make them hatch is to walk a prescribed distance. Some eggs require 10k of nurturing before they crack. If you want to catch different Pokemon (and if you are a player, you #gottaacatchemall), then you will find spawning grounds in parks and open spaces. If you want to top up the items you need to catch Pokemon, then you have to walk from one Pokestop to another.
One of things that appears to make gambling ‘sticky’ is the uncertainty of reward. Each rare win reinforces the desire to keep trying for a bigger future reward. Pokemon GO has an interesting strategy of combining certainty in reward (eggs hatch after a defined distance is walked) with uncertainty (creatures appear unpredictably, and their behavior and value is unpredictable). As you progress in the game the rewards increase along with your status. Our brains are washed in an addictive dopamine broth with every reward, every step forward.
Pokemon GO also strives for social equity. When a creature appears in a given location, anyone who is there can see it and catch their copy of it. This means that there is real value in finding stronger players than yourself, because they will trigger the arrival of rarer creatures. These stronger players are also likely to have set lures to attract creatures, and the benefit of these lures is also socialized. Stronger players will have obtained their status by walking great distances, and so a sort of social modeling probably takes place influencing the behavior of newer players, further reinforcing the culture of movement.
The rest is here:
Another great discussion on this amazing game!
Enjoy!
David.

Thursday, August 18, 2016

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

August 18  Edition.
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A fortnight where we have all sorts of macro-economic news dominating little Australia with the central banks in the US, UK and Japan all adjusting policy of leaving things as they are for now.
Interest rates in Australia have dropped again and overseas we see ongoing issues with other economies. Zerohedge reports that the global money supply has risen to $89 Trillion from only 10% of that just 15 years ago.
The major themes this week have been the impotence of central banks and the need for Governments to actually start making some sensible decisions.
The most important issue that was flagged this week was the issue of social inequality and its impact on the nation’s finances and public confidence in Government.
COMMENT
  • August 13 2016 - 12:15AM

Income inequality to blame for voter dissent

·         Ross Gittins
The single best explanation for the rise of Mr Crazy, Donald Trump, is that over the four years to 2013, the real income of the top 1 per cent of American households rose by 17.4 per cent, while that of the bottom 99 per cent rose by 0.7 per cent, giving the top few 85 per cent of the growth.
Another country where the gap between high and low incomes has widened markedly is Britain. And what crazy thing have the Brit voters just gone and done? You remember.
I think it's a case of what physiotherapists call "referred pain" - what you feel in some part of your body is actually coming from a problem somewhere else.
Many voters are conscious that their income doesn't seem to be growing and know something's badly wrong. But they don't join the dots the way an economist would.
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Here are a few other things I have noticed.

General Budget Issues.

ANALYSIS
  • August 1 2016 - 5:30AM

Housing no impediment as Reserve Bank prepares to cut interest rates

Peter Martin
Apparent strong house price growth in Sydney and Melbourne is unlikely to dissuade the Reserve Bank from cutting interest rates on Tuesday, in part because it's not what it seems.
The CoreLogic home price index jumped 3.1 per cent in Sydney and 1.6 per cent in Melbourne after the Reserve Bank cut rates in May, and then a further 1.2 per cent and 0.8 per cent in June sparking fears that the Bank had ignited a new house price boom.
The jumps were inconsistent with other data showing that sales volumes and credit growth were weak.
Now Reserve Bank watchers believe they've cracked the puzzle. CoreLogic changed the way it calculated its indexes in May, adding to the apparent increases in cities whose prices had a history of rising quickly.
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  • August 1 2016 - 12:00AM

Apartment building to collapse 50 per cent says BIS Shrapnel

Peter Martin
Apartment building is set to to collapse 50 per cent over the next four years according to forecaster BIS Shrapnel, with only Sydney set to buck the trend.
Its Building in Australia 2016-2031 report says national dwelling commencements have already peaked and will begin to decline in the second half of this year.
"After recording strong growth during the past four years, we estimate that total dwelling starts reached an improbable 220,100 in 2015-16, an all-time high," said BIS Shrapnel associate director Kim Hawtrey.
"From this level, national activity is forecast to begin trending down over the following three years, with the high-flying apartments sector leading the way down."
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Morrison uses budget fairness argument

AAP – August 9 2016
Scott Morrison has stepped up the pressure to pass budget savings, saying every measure blocked by the new parliament will make it harder for families.
The federal treasurer is doing the rounds with new crossbench senators in a bid to get $40 billion in savings and revenue measures through parliament and return to surplus by mid-2021.
He has met with the Nick Xenophon Team and is due to hold talks with One Nation leader Pauline Hanson and her advisers in coming days.
"We need to all understand this - every time we don't pass a savings measure, that makes it harder and harder to retain our triple A credit rating, to ensure we don't see the further impacts of that flow-on to bank rates and other impacts on households," Mr Morrison told 2GB radio on Monday.
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RBA’s Glenn Stevens urges spending on infrastructure

  • The Australian
  • 12:00AM August 13, 2016

Paul Cleary

Outgoing Reserve Bank governor Glenn Stevens has called for a more “nuanced” debate about public sector debt in his last official speech this week, saying targeted investment in infrastructure by government could address the ineffectiveness of monetary policy.
At a time when monetary ­policy’s impact is waning, and speculation about the use of quantitative easing is emerging, Stevens wants to promote a third way that elevates the role of public sector investment as a driver of economic growth.
He tackled the popular debate about government debt by making three very important points that should prompt our political leaders to think more creatively about options for sustaining growth. First, he noted that households were three times more indebted than the public sector as a share of GDP, 125 per cent versus 40 per cent in gross terms, and this explained why cutting interest rates to record lows had become less effective in boosting growth.
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Time for a hard-nosed discussion on spending

  • The Australian
  • 12:00AM August 13, 2016

Alan Kohler

The shocking fiscal performance of the Australian government in 2013-14 is now coming home to roost.
As the world wakes up to the failure of monetary policy to stimulate economic growth and inflation, and attention moves to the need for fiscal policy to take over, Australia is in no position to do it — because of what happened in that year.
In 2012-13, the last year of the Labor government, the deficit increased from $18.8 billion to $48.8bn.
That was then compounded by the failure of the new Coalition government to do enough to repair it in 2014 — not because prime minister Tony Abbott and treasurer Joe Hockey didn’t want to, but because they sprung the solution on an unsuspecting public and the parliament and mucked up the politics so badly that they were both sacked.
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  • August 13 2016 - 5:00PM

No time like the present to up the public borrowing rate

Mark Kenny
Remember when they started telling you about "good" cholesterol? It took a bit of getting used to.
Dire warnings about stroke, heart attack and peripheral artery disease meant the switch to embracing a new form of cholesterol was barely credible.
Such had been the take-out from "cholesterol equals an early death," that some people had immediately given away butter and eggs altogether.
Could debt be the same? Could there be good debt as well as the more common bad variety?
Does debt have to be like plaque building up in our economic arteries, lumbering future generations with unconscionable liabilities, and narrowing their opportunities? 
There's no doubt Australians had been led to this simple conclusion and if any missed it, Tony Abbott came along to make it explicit: Debt and deficit equalled disaster.
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Health Budget Issues.

  • August 4 2016

Medical costs forcing Australians to skip healthcare

Rania Spooner
Australians are paying five times more than Britons for medical care, causing many people with chronic health conditions to forgo treatment because it's too expensive.
Nearly half of Australians living with depression, anxiety and other mental health conditions have skipped medication or therapy because of cost, according to a study by James Cook University and the NSW Bureau of Health Information.
As had more than 30 per cent of those with asthma and emphysema, 27 per cent of those with diabetes, 25 per cent with arthritis and 20 per cent of cancer patients, according to the study recently published in the Australian Journal of Primary Health.
Asthmatic Stephanie Horan, 27, was clinically dead for 12 minutes after she stopped her medication for social reasons and suffered a near-catastrophic asthma attack as a teenager.
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One in five patients skip care because of costs

Paul Smith | 8 August, 2016 | 
More than one-fifth of patients with chronic conditions say they skip care because of the costs, Australian research has found.
As patients deal with the financial impact of the Medicare rebate freeze and looming increases to PBS fees, the struggle of those needing regular care has been revealed in a survey published in the Australian Journal of Primary Health.
One-quarter of patients with arthritis said they avoided care because of costs, a figure rising to 27% for those with diabetes and 44% for those with depression, anxiety or other mental health conditions.
The figures are based on a survey of 1988 adults by the Commonwealth Fund in 2013.
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  • August 1 2016 - 6:29PM

Australia's most common and expensive drugs revealed by PBS data

Kate Aubusson
They may be the most common drug in medicine cabinets across the country, but statins have been bumped from the top spot in the latest rankings of Australia's most costly drugs.
The cholesterol-lowering drugs used to help prevent heart attacks and stroke were the most prescribed and dispensed pharmaceutical in Australia, PBS data revealed. 
But the sheer volume of prescriptions for the relatively cheap medicine paled in comparison with the dizzying price tag of Adalimumab​; an anti-inflammatory biologic used to treat autoimmune conditions including rheumatoid arthritis and Crohn's disease.
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Pharmacist diabetes health checks to be trialled

Paul Smith | 1 August, 2016 | 
Pharmacists will give diabetes health checks under a trial program being rolled out by the Federal Government.
In a major reform speech to pharmacist leaders last week, Health Minister Sussan Ley (pictured) said three separate pilot trials were being developed with $50 million in funding under the Sixth Community Pharmacy Agreement.
The first was diabetes health checks, the second was a trial designed to improve medication management for Indigenous patients and the third would look at improving patients' medication management after discharge from hospital.
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Govt urged to properly fund health reforms

- on August 1, 2016, 1:01 am
It's hailed as a turning point for the health system but doctors say it's being stymied by a lack of money from the federal government.
Prime Minister Malcolm Turnbull unveiled Health Care Homes earlier this year to keep Australians with chronic disease out of hospital, labelling it one of the biggest reforms in the history of the health system.
The government is spending $21 million on a trial of the program next year, involving 65,000 patients at 200 medical practices.
But health experts and consumer advocates have teamed up to call for the program to be expanded and accelerated, insisting the existing system is disconnected.
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Cost of surgery cheaper in the US, says Medibank

Sarah-Jane Tasker

Australia’s largest private health insurer, Medibank, has warned that “market failure” in the ­nation’s healthcare system is fuelling an increase in costs, making some surgical proced­ures more expensive here than in the US and Europe.
“The increase in prices cannot be explained by increasing complexity of procedures alone when the cost of a procedure in Australia is more expensive than in other comparable countries,” Andrew Wilson, Medibank’s executive general manager, told The Australian.
Mr Wilson pointed to a study which found cataract surgery in Australia in 2013 was more ­expensive than in the US and twice as costly as in Europe.
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Visa plan to stop foreign doctor influx

  • The Australian
  • 12:00AM August 9, 2016

Sean Parnell

Overseas-trained medical practitioners would no longer be ­granted visas to work in Australia, under a contentious proposal from the Health Department that heralds the end of the ­nation’s shortage of locally trained ­doctors.
With thousands of foreign doctors currently in the system, and an increasing number of local graduates, the department has ­secretly argued that Australian-trained doctors will struggle to find jobs if the immigration pathways are not closed.
The department wants 41 health roles — including general practitioners, resident medical ­officers, surgeons and anaesthetists — to be removed from the Skilled Occupations List in the hope that Australian doctors will fill areas of need, particularly in remote areas. While its recommendations were not accepted by the Turnbull government in visa changes made before the election, they will be revisited within months and Health Minister Sussan Ley has foreshadowed broader workforce reforms next year.
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Visa list ignores Health’s job plan

  • The Australian
  • 12:00AM August 10, 2016

Sean Parnell

The Turnbull government is split over the Health Department’s call for foreign-trained medical professionals to no longer be fast-tracked into jobs that could be filled by Australian graduates.
The Australian yesterday revealed the department had recommended the commonwealth “remove all medical occupations” from the Skilled Occupation List for 2016-17, nominating 41 jobs ­including GPs, resident medical officers and ­anaesthetists.
The move is an acknowledgment by policymakers that local graduates may struggle to find training places and jobs if the immigration pathway remains open.
Yet 28 of the 41 occupations have not even been flagged by ­immigration officials for future review.
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Health Insurance Issues.

Health ‘warning’ for doctors

  • The Australian
  • 12:00AM August 9, 2016

Sarah-Jane Tasker

A leading US chief medical officer has warned Australian doctors it is only a matter of time before health insurers accelerate the “never events” for which they refuse to pay.
Peter Edelstein, chief medical officer at the world’s largest science information company, Elsevier, said Australian doctors should avoid what their counterparts in the US did, which he said was bury their heads in the sand and hope the issue went away.
“If that happens, then the insurers make all the decisions about what gets paid for what, which is not the best for patients,” he said.
“Physicians have a fantasy they are in control, but when we’re talking about this much money, they are not in control any more.
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Medical Home Issues.

Health care homes: What's the cost?

1 August 2016
IT'S hailed as a turning point for the health system but doctors say it's being stymied by a lack of money from the federal government.
Prime Minister Malcolm Turnbull unveiled Health Care Homes earlier this year to keep Australians with chronic disease out of hospital, labelling it one of the biggest reforms in the history of the health system.
The government is spending $21 million on a trial of the program next year, involving 65,000 patients at 200 medical practices.
But health experts and consumer advocates have teamed up to call for the program to be expanded and accelerated, insisting the existing system is disconnected.

See also this link for a new report on this initiative:

http://www.medicalrepublic.com.au/call-clearer-vision-medical-homes/ 
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Pharmacy Issues.

Is there a pharmacy wage crisis?

PSA16’s panel discussion on improving pharmacists’ remuneration acknowledged widespread concerns in the industry

Employees are worried about pharmacist wages, said PSA CEO Dr Lance Emerson in opening the panel discussion at the conference on Saturday 30 July.
“It’s the single largest issue facing the profession in community pharmacy,” he said.
“We hear your concerns about low income and wages. The PSA is actively working with others to look at that, but we’re also looking at diversifying with evidence-based roles.”
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Superannuation Issues.

How the Senate can fix the superannuation mess

  • The Australian
  • 10:48AM August 9, 2016

Robert Gottliebsen

The government needs help on superannuation. It is now clear it rushed into badly thought out superannuation changes on advice from Treasury.
Treasury for years has deliberately issued false statements about the cost of superannuation to the Australian nation and, unfortunately, has no credibility in giving advice on this subject. (Treasury’s hoax is tormenting the super debate, March 9 2015)
A more experienced Treasurer would have known this but Scott Morrison got caught. It’s now up to the Senate to get both Morrison and the country out of the mess that has been created. At this stage, I am not going to tell the Senate what to do in detail but let’s set up a few guidelines.
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Superannuation reform: no saving grace in this stuff-up

  • The Australian
  • 12:00AM August 9, 2016

Judith Sloan

The superannuation package Scott Morrison announced in this year’s budget is turning into a complete shemozzle.
The Liberal Party’s membership is in revolt — that is, among those members who haven’t already resigned.
There is a widespread sense of betrayal. There are also some specific criticisms about the package: it’s over-engineered, unworkable, unfair and the figures are wrong.
The real reason Malcolm Turnbull knocked back Kevin Rudd had nothing to do with Rudd’s poor interpersonal skills but rather Turnbull’s realisation that his party base would go into complete meltdown had he supported the former prime minister’s candidacy for the position of UN secretary-general.
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Time for bipartisanship on super

12 August 2016Mike Taylor
Mike Taylor writes that the major parties need to understand that notwithstanding the delicate make-up of the Senate, it is time to end the uncertainty around superannuation.'
It may have been only at the margin, but three months after tabling the Federal Budget in the Parliament, and a few days after confirmation of the make-up of the Senate, the Treasurer, Scott Morrison, began signalling the Government's preparedness to concede changes to its Budget super settings.
Speaking on commercial radio early last week, Morrison said while the proposed $500,000 lifetime cap on top-up contributions out of post-tax income would remain, he was prepared to write in exemptions for people experiencing "major life events".
In doing so, he cited pay-out as a result of an accident or similar as monies which would be exempted from the $500,000 cap.
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I look forward to comments on all this!
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David.

This Is A Great Anniversary - I Am Amazed It Has Taken So Little Time To Get So Far!

This appeared late last week.

#FHIR is 5 years old today

Posted on August 11, 2016 by Grahame Grieve

Unofficial FHIR project historian Rene Sponk has pointed out that it’s exactly 5 years to the day since I posted the very first draft of what became FHIR:

Five years, on August 18th 2011 to be precise, Grahame Grieve published the initial version of FHIR (known as RFH at the time) on his website. The date of the initial version was August 11th – which is the reason for this post today. Congratulations to all involved for helping to create a success – FHIR has gained a lot of interest over the past few years, and a normative version will be published in the near future.

Wow. 5 years! Who would have thought that we’d end up where we are? I really didn’t expect much at all when I first posted RfH back then:

What now? I’m interested in commentary on the proposal. If there’s enough interest, I’ll setup a wiki. Please read RFH, and think about whether it’s a good idea or not

Well, there was enough interest, that’s for sure.

And it’s rather a coincidence, then, that on the 5th anniversary of the first posting, I’ve just posted the ballot version for the STU 3 ballot. This version is the culmination of a lot of work. A lot of work by a lot of people. Lloyd Mckenzie and I have been maintaining a list of contributers, but so many people have contributed the specification process now that I don’t know if we’re going to be keep even a semblance of meaningfulness for that page. I’ll post a link to that version soon, with some more information about it

p.s. Alert readers will note that the blog post announcing RfH was dated Aug 18th – but it was first posted August 11th.

Here is the link:

http://www.healthintersections.com.au/?p=2543

This is really lightning progress in a really complicated area. Well done to all!

David.

Wednesday, August 17, 2016

I Hope Some Serious Experts Have Examined These Plans Carefully. It Is Important They Do!

This appeared a little while ago:

Linkable de-identified 10% sample of Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Schedule (PBS)

This data is a collection of the current and historical use of Medicare and PBS services. This data release contains approximately 1 billion lines of data relating to approximately 3 million Australians. The data sets have been designed to enable other datasets to be linked in the future, for example hospital data, immunisation data. The addition of these data sets will greatly increase the amount of data and open new areas of analysis.
A suite of confidentiality measures including encryption, perturbation and exclusion of rare events has been applied to safeguard personal health information and ensure that patients and providers cannot be re-identified.

Confidentialisation Methodology

All Medicare and PBS claims for a random 10% sample of patients are included in the release. To be clear, it is a 10% sample of patients, not a 10% sample of Medicare or PBS claiming activity for the selected patients. Although the data held by the Department does not contain identifiers such as individual patient names, a number of steps have been taken to further protect the confidentiality of the released data.

ID number encryption

  • Patient ID Numbers (PIN) are encrypted using the original PIN as the seed.
  • Provider ID numbers are encrypted using the original ID number as the seed.

Data adjustments

  • Only the patient’s year of birth is given, not the date of birth.
  • Date of service and date of supply are randomly perturbed to ±14 days of the true date.
  • Geographic aggregation:
Provider State is derived by the Department of Health by mapping the provider's postcode to State. The states are then collapsed to ACT and NSW, Victoria and Tasmania, NT and SA, QLD, and WA. This is not the Servicing Provider State which is supplied from the Department of Human Services.
  • Rate event exclusion: Medicare and PBS items with extremely low service volumes have been removed.
Here is the page:
There has been a lot of discussion of re-identification of individual data from providing access to data sets like this:
Here is a useful link which discusses some of the issues:

The Debate Over ‘Re-Identification’ Of Health Information: What Do We Risk?

August 10, 2012
Dateline: May 18, 1996 – The collapse and attack. Massachusetts Governor William Weld wasn’t feeling well under his commencement cap and gown. He was about to receive an honorary doctorate from Bentley College and give their keynote graduation address. But, unbeknownst to him, he would instead make a critical contribution to the privacy of our health information. As he stepped forward to the podium, it wasn’t what Weld said that now protects your health privacy, but rather what he did: He teetered and collapsed unconscious before a shocked audience.
Weld recovered quickly and the incident might have passed quietly but for an MIT graduate student. Latanya Sweeney’s studies had brought to her attention hospital data released to researchers by the Massachusetts Group Insurance Commission (GIC) for the purpose of improving healthcare and controlling costs. Federal Trade Commission Senior Privacy Adviser Paul Ohm provides a gripping account of Sweeney’s now famous re-identification of Weld’s hospitalization data using voter list information in his 2010 paper “Broken Promises of Privacy.”
It would be difficult to overstate the influence of the Weld voter list attack on health privacy policy in the United States – it had a direct impact on the development of the de-identification provisions in the HIPAA Privacy rule. However, careful examination of the demographics in Cambridge, MA at the time of the re-identification attempt indicates that Weld was most likely re-identifiable only because he was a public figure who experienced a highly publicized hospitalization rather than there being any actual certainty about the accuracy of his attempted re-identification using the Cambridge voter data.
The Cambridge population was nearly 100,000 and the voter list contained only 54,000 of these residents, so the voter linkage could not provide sufficient evidence to allege any definitive re-identification. Because the logic underlying re-identification depends critically on being able to demonstrate that a person within a health data set is the only person in the larger population who has a set of combined “quasi-identifier” characteristics that could potentially re-identify them, re-identification attempts face a strong challenge in being able to create a complete and accurate population register. Furthermore, the same methodological flaws that undermined the certainty of the Weld re-identification continue to create far-reaching systemic challenges for all re-identification attempts – a fact which must be understood by public policy-makers seeking to realistically assess current privacy risks posed by HIPAA de-identified data. (The full details of these technical issues for re-identification risk assessment are available in a more lengthy review.)
With the benefit of hindsight, it is apparent that the Weld/Cambridge re-identification has served as an important illustration of privacy risks that were not adequately controlled prior to the 2003 HIPAA Privacy Rule. Still, a broader policy debate continues to rage between some voices, like Ohm, alleging that computer scientists can re-identify individuals hidden in anonymized data with “astonishing ease,” and others who view de-identified data as an essential foundation for a host of envisioned advances under healthcare reform.
Nowhere is this tension more evident within the health policy arena than in the recent proposal by the Office of the National Coordinator for Health Information Technology (ONC) for standards, services, and policies enabling secure health information exchange over the Internet to support the Nationwide Health Information Network (NwHIN). Motivated by concern that perceived re-identification risks could “undermine trust”, ONC proposes that de-identified health information could not be used or disclosed for any commercial purpose, a policy which would be certain to unleash a Pandora’s box of unintended consequences. Yet ONC also broadcasts their skepticism regarding purported re-identification risks by noting that they have been “somewhat exaggerated”.
Because a vast array of healthcare improvements and medical research critically depend on de-identified health information, the essential public policy challenge then is to accurately assess the current state of privacy protections for de-identified data, and properly balance both risks and benefits to maximum effect.
Lots more here:
The steps taken to protect the individual identities seem reasonable to the non-expert but with such a large data set one wonders just what statistical tricks might be possible to re-identify some data.
I would like to hear some expert views on what risk(s) are being run here.
David.

Tuesday, August 16, 2016

I Think We Are Going To Need To Keep A Close Eye On The New CEO Of The ADHA. He Has A Clean Slate Here He Needs To Exploit For All Of Us!

This popped up just before I fell ill.

Appointment of CEO for the Australian Digital Health Agency

Minister for Health, Sussan Ley, has announced the appointment of Mr Tim Kelsey as the Chief Executive Officer of the Australian Digital Health Agency which is responsible for all national digital health services and systems.
 Page last updated: 01 August 2016
PDF printable version of Appointment of CEO for the Australian Digital Health Agency - PDF 337 KB

1 August 2016

Minister for Health, Sussan Ley, today announced the appointment of Mr Tim Kelsey as the Chief Executive Officer of the Australian Digital Health Agency which is responsible for all national digital health services and systems, with a focus on engagement, innovation and clinical quality and safety.

“Most importantly, the new Agency is the system operator for the Government’s recently launched My Health Record System which is a secure, online summary of people’s health information that can be shared with doctors, hospitals and healthcare providers with the permission of patients. This gives people more control of their health and care and with access to new digital apps and online services the Australian community is benefiting from the modern information revolution,” Minister Ley said.

“I am, therefore, delighted to announce that following an extensive national and international search Mr Tim Kelsey has accepted the permanent role of CEO to head up of the Australian Digital Health Agency. He is internationally regarded as a leader in digital health, in both the private and public sectors, and has a proven track record in delivery of digital health services.”

Ms Ley said that previously Mr Kelsey was the first National Director for Patients and Information in NHS England. This role combined the functions of chief technology and information officer with responsibility for patient and public participation, marketing, brand and communications for the national commissioner for health and care services. He was also the first chair of the National Information Board in England which successfully oversaw design of a new digital health strategy for the NHS.

Before becoming a director of NHS England, he designed and launched NHS Choices website – the national online information service which has transformed access to apps and mobile digital services for patients and citizens in England. In 2000, he co-founded Dr Foster, an organisation which pioneered public access to online information about local health services.

More recently, Mr Kelsey has been working with Telstra Health to focus on ways to use its technology capabilities to support transformation in the costs and quality of healthcare in Australia.

‘He is the right choice for the appointment as CEO of the Australian Digital Health Agency to further the Australian Government’s commitment to use digital health to create a world-class health system for all Australians,” Minister Ley said.

Mr Kelsey will commence in his new CEO role with the Australian Digital Health Agency in mid-August 2016.

Media contacts: Troy Bilsborough – 0427 063 150 Steve Block - 0428 213 264
Here is the link:
There are two useful articles to consider on all this:
First we have:

Care.data: gone but not forgotten

Care.data has been officially dead for more than a month, but its legacy is far from buried. Ben Heather takes another look at the fine detail of the Caldicott report that officially killed the programme and what it could mean for the future of sharing and handling of patient data.
On 19 July, with the nation’s eyes on the long-awaited Chilcot Iraq inquiry report, the end of the controversial care.data programme barely rated a mention.
The programme that damaged public confidence in the government’s handling on their personal health information died quietly.
The recommendations contained in the report that killed it, National Data Guardian Dame Fiona Caldicott’s review into health data security and patient consent, caused barely a ripple.
But as the summer window for public consultation on the recommendations rolls on, concerns are surfacing that care.data, or at least its ambition, are still alive and kicking.
While the report’s recommendations on greater data security and information governance have been lauded, the position on opt-outs and data collection have started to attract attention and some familiar concerns.
Sharing concerns
One dramatically worded online petition doing the rounds at the moment claims the government is now attempting “privatisation of your medical records, but this time without even telling us”.
More sober analysis from clinicians and privacy groups doesn't go that far, but does reveal worries that parts of care.data will endure at NHS Digital [until 1 August the Health and Social Care Information Centre], but with less opportunity for patients to opt out and weaker oversight.
They point to recommendations around data sharing, consent and opt-outs in Dame Fiona’s report, most of which the government has already indicated it is likely to back.
Retired GP Mary Hawking, who sat on the now disbanded general practice extraction service independent advisory group, says some of the Dame Fiona’s proposals would give NHS Digital wider discretion to gather and use confidential patient data.  
“There doesn’t seem to be anyone independent at all looking at how HSCIC [now NHS Digital] uses whatever data they chose and use it however they chose. They just had to say it is de-identified,” Hawking says.
Hawking says de-identifying data is “incredibly difficult” and became even more so as more and more de-identified data was linked and shared, potentially exposing patient’s sensitive health records.
Phil Booth, co-founder of privacy campaign group medConfidential, raises a similar point, arguing that much of the so-called anonymised data sent out to third-parties now is not fully anonymised, with a patient identity easily uncovered.
He says while the care.data brand is gone, the programme to gather and share a wider range of patient’s confidential health information is very much alive. “Care.data has crashed but the policy remains; they still want that data,” he says.
Dame Fiona’s report also recommends going further than care.data, removing the patients’ right to opt-out of this central collection altogether, he adds.
“HSCIC [NHS Digital] needs to be perfect if we don’t want to give people an opt-out. The opt-out is ultimate protection.”
Responding to question from Digital Health News, NHS Digital says all gathering of patient data is now, and will be in the future, subject to legal oversight.
This includes scrutiny by the standardisation committee for care information, which oversees the collection of data, and the data access advisory group, which oversees requests for data.
What information might be gathered and shared in future will be dependent on the outcome of consultation, the statement says. “It is vital that there is a full consultation and dialogue with the public and professionals before any implementation of the recommendations can take place.”
Lots more here:
Second we have:

Australia hires former head of controversial UK care.data plan

Tim Kelsey to head new Digital Health Agency

The Australian government's love affair with digitisation experts from the United Kingdom continues, with former National Health Service (NHS) digital head Tim Kelsey made boss of the antipodean Digital Health Agency (successor to the National e-Health Transition Agency).
The leave moves Telstra Health shy a director, since that was Kelsey's destination when he announced his resignation from the NHS in September 2015.
Kelsey quit the NHS after several years in charge of its highly-controversial care.data program, an data sharing operation that was criticised as privacy-invasive.
In 2014, he went on the record saying that “"no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised.”
The system was so popular among doctors that its bosses started switching from carrot to stick in 2014, saying laggards would have funding withheld.
By August 2015, a Cambridge University study noted care.data's failings: “mismanagement and miscommunications, inadequate protections for patient anonymity, and conflicts with doctors”. The boffins opined that requiring patients to opt-out was “unsuitable” and said there was a risk “to the trust between patients and general practitioners”.
More here:
Just a few comments:
First I hope Mr Kelsey is clear just how different GP in Australia and the UK is – especially with regard to contract obligations and private management.
Second I hope we will see proper public Privacy Impact Assessments on all new ADHA initiatives.
Third I hope he becomes an expert on all the reports done on NEHTA and understands just how different an organisation ADHA needs to be from NEHTA in terms of communication, stakeholder trust, communication and engagement as well as providing a dramatic improvement on transparency and openness.
I wish him great success and for him to fully deliver on the reasonable and useful promise e-Health has. Time will tell!
David.