Note: I have excluded any commentary taking significant funding from the Agency or the Department of Health on all this to avoid what amounts to paid propaganda. (e.g. CHF, RACGP, AMA, National Rural Health Alliance etc. where they were simply putting the ADHA line – viz. that the myHR is a wonderfully useful clinical development that will save huge numbers of lives at no risk to anyone – which is plainly untrue) (This signifies probable ADHA Propaganda)
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If privacy is dead, why can't we sell our own data?
By Michelle Jamrisko & Mark Miller
7 September 2018 — 2:03pm
If privacy is truly a thing of the past, then people should at least profit off their own personal information.
That's the view of data rights advocate Brittany Kaiser, who came forth this year to testify about how former employer Cambridge Analytica improperly hoovered up data on millions of Facebook users.
It's a perspective shared by an increasing number of online users around the world, who're waking up to the fact that Facebook and Google's online empires are built on data they signed away without compensation.
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Paid Post
Taking My Health Record on the Road
by Seniors News ADHA Propaganda
7th Sep 2018 11:10 AM | Updated: 11:10 AM
CARSELDINE retirees Peter Button and Cathy Zappala join a legion of grey nomads taking their health on the road with My Health Record.
Cathy suffers from chronic health issues and has been using My Health Record for many years to keep all her health information in one place and easily accessible for her treating doctors, specialists and hospitals.
"The benefits of My Heath Record at my age are undeniable. My wife and I are about to set off on a trip around Australia in our motorhome and we plan to rely solely on My Health Record to contain all our health information" Peter said.
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Getting The Facts About My Health Record
She is encouraging everyone to find out the facts about My Health Record to decide whether it’s right for them.
“The whole point of My Health Record is that all the current medications I am on will come up on My Health Record,” Esther said.
“If I travel to Victoria or New South Wales, and anything happens to me, health professionals need to know what medication I am on.”
Esther’s initial concerns about confidentially were overcome when she learnt more about My Health Record’s privacy and access controls.
“It’s something that you really need to think about and the LGBTI community really need to think about it – enough with the scaremongering, you’re LGBTI and you’re aging, you’ve got chronic disease, you’ve got illness, people need to know,” Esther said.
“Don’t listen to everyone else. You really need to think about what’s good for you – you’ve got to ask questions.”
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Dr Bob Walker said...
Hi, my name is Dr Bob Walker and I am a GP working in Lindisfarne, Tasmania but I also run student clinics in our local Y11/Y12 State Co-Ed College. Over the last 10 years these Clinics have been highly successful and we have had thousands of consultations providing non judgmental, evidence based advice in strictly confidential surroundings. Our Clinics are easy access/drop in and all students are bulk billed. The local path lab provide bulk billed tests and we record and prescribe using our practice software. In this time we have clearly dropped the pregnancy rate, significantly limited the spread of sexually transmitted diseases (STDs) and done a lot of good mental health work. Not one of the students who have engaged with us in this time have taken their lives.
However, the arrival of My health Record (MHR)is a total disaster as our Clinics will be a lot harder to run. After a lot of soul searching we plan to close our Clinics on 15 November - a very backward step for youth health. About 15% of our young patients have a MHR, presumably enrolled by their parents and almost all without their knowledge. These students are really distressed by having a MHR and now worry about their confidentiality. If we do not tick a box on our path referrals to avoid results going onto their MHR, parents and others can see the results of STD and HIV screens. If a pharmacist slips up and fails to block a dispensing activity, scripts for contraceptives and medications for STDs are also visible. All Medicare items numbers including the names and locations of doctors, all path results and all scripts appear on these records up to the age of 14yrs. Medicare limits these flows between 14 and 18yrs unless we slip up as mentioned. However, Health Summaries, with explosive diagnoses can be uploaded by hurried/unthinking providers for all age groups. After 18yrs, all new data uploads is clearly visible to home viewers. The ADHA proudly states that young people can take over their records and limit access but this is easier said than done and our students (and quite tech savvy ones, too) have found this quite difficult. Also, parents can put pressure on their teens to open up a private record and if they do not comply, suspicions and arguments arise. As doctors we have all had cases where a young person would have been seriously injured, made homeless or possibly suicided had details of their medical record been seen by others. Doctors will now become targets even though we are treating mature minors and only working in their best interest and safety. I am saddened by the lack of consultation by the ADHA with us youth health workers. The support of MHR from the AMA and the Royal Australian College of GPs is not based on a sound knowledge of how young people interact with our health system. As a GP, I can see the benefit of a well maintained, up to date and accurate MHY for older people and other patients with complex health conditions, multiple medications, serious allergies, drug addictions and complex psychiatric illnesses. However the risks to young people far outweigh the advantages of the current 'Opt Out' System. There has to be a better way and I hope the forthcoming Senate Enquiry will recommend a modified 'Opt In' system and spare our young people from what is now a cruel cyber threat to their wellbeing. If anyone reading this can influence Government policy at this critical time, your action will be much appreciated by young Australians.
However, the arrival of My health Record (MHR)is a total disaster as our Clinics will be a lot harder to run. After a lot of soul searching we plan to close our Clinics on 15 November - a very backward step for youth health. About 15% of our young patients have a MHR, presumably enrolled by their parents and almost all without their knowledge. These students are really distressed by having a MHR and now worry about their confidentiality. If we do not tick a box on our path referrals to avoid results going onto their MHR, parents and others can see the results of STD and HIV screens. If a pharmacist slips up and fails to block a dispensing activity, scripts for contraceptives and medications for STDs are also visible. All Medicare items numbers including the names and locations of doctors, all path results and all scripts appear on these records up to the age of 14yrs. Medicare limits these flows between 14 and 18yrs unless we slip up as mentioned. However, Health Summaries, with explosive diagnoses can be uploaded by hurried/unthinking providers for all age groups. After 18yrs, all new data uploads is clearly visible to home viewers. The ADHA proudly states that young people can take over their records and limit access but this is easier said than done and our students (and quite tech savvy ones, too) have found this quite difficult. Also, parents can put pressure on their teens to open up a private record and if they do not comply, suspicions and arguments arise. As doctors we have all had cases where a young person would have been seriously injured, made homeless or possibly suicided had details of their medical record been seen by others. Doctors will now become targets even though we are treating mature minors and only working in their best interest and safety. I am saddened by the lack of consultation by the ADHA with us youth health workers. The support of MHR from the AMA and the Royal Australian College of GPs is not based on a sound knowledge of how young people interact with our health system. As a GP, I can see the benefit of a well maintained, up to date and accurate MHY for older people and other patients with complex health conditions, multiple medications, serious allergies, drug addictions and complex psychiatric illnesses. However the risks to young people far outweigh the advantages of the current 'Opt Out' System. There has to be a better way and I hope the forthcoming Senate Enquiry will recommend a modified 'Opt In' system and spare our young people from what is now a cruel cyber threat to their wellbeing. If anyone reading this can influence Government policy at this critical time, your action will be much appreciated by young Australians.
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Using data to shape the future of health services
Amanda Lyons 7/09/2018 2:36:10 PM
newsGP spoke with two organisations running primary care data projects that show the potential value of secondary patient data for planning – and predicting – health services at a population level.
General practice data can be extremely useful in predicting future health services and informing current ones.
The ongoing debate over My Health Record highlights the sensitive nature of handling information from medical records, particularly in terms of the secondary use of patient data.
An example of such secondary use is when data collected for one purpose, ie to register a personal account, is then used again for another purpose, such as targeted advertising. This is how a company like Facebook monetises its social media platform.
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An example of such secondary use is when data collected for one purpose, ie to register a personal account, is then used again for another purpose, such as targeted advertising. This is how a company like Facebook monetises its social media platform.
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NDIS flaw let providers log in and steal thousands
- 12:00AM September 7, 2018
A security flaw in the service portal for the $22 billion National Disability Insurance Scheme was closed last night after it was revealed fraudulent operators could search random numbers, bring up private information of disabled people and steal thousands of dollars without question.
The agency in charge of the rollout is investigating a “small number” of providers who exploited the security gap and it will set about recovering stolen or misappropriated tens of thousands of dollars.
The design fault in the NDIS interface allowed any participant or registered provider to guess a nine-digit plan number in the search function and bring up random support packages from participants. Companies have then used this function to essentially raise their own invoices in these windows and be paid immediately.
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New blockchain ledger will let US residents sell personal healthcare data
IBM and a start-up have launched a blockchain-based app that lets patients eventually sell anonymized data to pharmaceutical companies, researchers and others while retaining greater control over privacy.
Lucas Mearian (Computerworld)07 September, 2018 08:41
Most people don't know it but there is a multi-billion dollar industry that collects healthcare information, strips it of basic personal identifiers such as name, address and Social Security Number, and then sells it off to researchers, drug developers, marketers and others.
Medical informatics companies, such as Iqvia (IMS Health), Optum, and Symphony Health reap the profits of selling the healthcare data while the people from whom it's collected have no control over how it's used. Nor do they get any compensation for it.
Start-up Hu-manity.co has partnered with IBM to develop an electronic ledger that gives consumers the cryptographic key to grant to their personal data, even allowing patients or others to control the specific purpose for which it's used, while also allowing them to eventually profit from it.
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September 5, 2018
How My Health Record Could Benefit Parents Who Travel
Written by Karli Steenkamp
Travelling is an exciting thing to do with your kids. It could also be stressful to make sure everything is packed. You have things to do for the kids and the places you go have be somewhat child-friendly. The last thing you might have thought of is what to do in an emergency. You will definitely have peace of mind knowing that your family is taken care of during your travels and one way to ensure this is with a My Health Record.
Many Australians are unsure of what My Health Record is about and how it could benefit you as a family. The Australian Digital Health Agency encourages parents to find out more about the great benefits of this system. Six million people already have a My Health Record with thirteen thousand health professionals joining this system. My Health Record will take the stress of your family’s health out of travelling.
What is My Health Record?
My Health Record is an online summary of a person’s health. It is a simple way for parents to monitor their children’s health, providing all the important information such as allergies, immunisations, test results and health checks.
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Hawkesbury Residents Get Their Chance to Have a Say on My Health Record
Source: Susan Templeman MP, Member For Macquarie
Posted: 5 Sep 2018
Hawkesbury residents now have a chance to have their say on the My Health Record system, with a Senate inquiry underway.
Member for Macquarie, Susan Templeman MP said the Senate had agreed to Labor’s calls for a comprehensive inquiry into the My Health Record system in response to significant privacy and security concerns.
Ms Templeman said the inquiry would give concerned residents an opportunity to share their views about My Health Record or suggest improvements.
“We support the My Health Record in principle but the Government has really botched the implementation,” Ms Templeman said.
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My Health Record access controls used only 214 times in million record trial
Individual document controls were used only 10 times during the electronic health record trial.
As one begins to work with numbers that approach zero, small differences in weightings and roundings can easily become orders of magnitude out of whack.
So it was that back in May, officials from the Australian Digital Health Agency (ADHA) told Senate Estimates that less than 0.1 percent of users in its trial areas had set access codes to change the default setting of general access to health care providers, and instead restrict data to nominated health care providers or people.
Thanks to numbers released by the Department of Health in response to Questions on Notice last month, we now know that "less than 0.1 percent" was incorrect by three orders of magnitude, or, more precisely, around 500 times smaller than ADHA said.
The department revealed that of the 971,252 records created during its trial period, only 214 access controls were set. Of that number, 196 records had a code applied to the entire record, 10 had individual documents locked down with a code, and eight had both record and document codes applied.
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5 September 2018
Doctors, not Dr Google, are the answer
The patient looks at me, desperate – “But what do you think it is, Preeya?”
Honestly, I have no idea. Which is not what I say out loud to the patient, who is getting increasingly anxious about the abdominal pain she has had for the past three days.
“I know it’s nothing nasty. Your appetite is normal, you don’t have a fever, your tummy is soft on examination and you’re still able to attend work and the gym despite the pain. So I think we should catch up in 72 hours and see how you’re going. If anything changes you come sooner.”
She stares back at me: “OK, but what’s causing the pain?”
The truth is we don’t always have the answer. Despite how the community often perceives us, or how we project ourselves, doctors are not magicians.
When I tell my patients: “Honestly, I don’t know” or “I can’t answer that”, I’m often faced with a shocked expression.
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Health in Australia: a quick guide - August 2018 update
31 Aug 2018
Description
Australia’s health outcomes are among the best in the world. At the same time, as Australia’s Health 2018 notes, our health system is a complex network of services and settings, involving a mix of health professionals, service providers, funders and regulators.
This updated guide provides an overview of Australia’s complex health system: what governments do, the role of private health insurance, how much we spend on health care, how Australian health outcomes compare internationally, the health care workforce and links to further information and resources.
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Denham Sadler
September 3, 2018
AusPost Digital iD on the rocks
Digital ID
Focus has moved away from the Digital iD project at Australia Post, with a reduction in funding and staff changes, InnovationAus.com understands.
Multiple sources have confirmed that focus has been moved away from the Digital iD project since new CEO Christine Holgate took over at Australia Post, and that its funding has been reduced.
The organisation also recently scoped interest in the private sector for funding or a sale, but this has now been “halted”. There were concerns that such a move could jeopardise the project’s deal with the federal government’s Digital Transformation Agency, and a potential partnership with the controversial My Health Record service.
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In encryption wars, it can be a matter of life or death
By Ben Grubb
4 September 2018 — 8:52am
Imagine this: Australia's police and intelligence agencies, acting on multiple anonymous tips, have identified a plot to set off a bomb in the CBD some time in the next 24 hours.
Now further imagine, at a midnight hearing, they request that a magistrate grant them a warrant to intercept the suspects' smartphone calls and texts. Without hesitation, the judge gives them approval.
Despite this, it's possible they will hear and see nothing. Perhaps the suspects are using Apple's iPhones to communicate with each other, making use of its built-in encrypted messaging app iMessage and another encrypted app, Wickr.
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My Health Record: fact vs fantasy
Dr Simon Torvaldsen
Chair, AMA (WA) Council of General Practice ADHA Propaganda
Monday 27 August 2018
Chair, AMA (WA) Council of General Practice ADHA Propaganda
Monday 27 August 2018
I doubt that many of you would have escaped the recent storm of publicity over the Federal Government’s My Health Record. In many respects, it is good to have this debate. If we are to spend large amounts of public money on a universal electronic health record, then it should be useful, effective, secure and trusted.
Unfortunately, some of the public debate has been misinformed and factually incorrect.
The AMA has played a central role in overseeing the development of the electronic health record, as it is a very expensive piece of public policy that has a lot of potential for good if well implemented. It also has the potential to be an expensive white elephant if not trusted, ineffective or too hard to use.
As initially proposed by the Department of Health, MyHR was a useless bureaucratic nightmare for doctors and patients alike. The AMA walked away from it, along with the key doctors contracted by the DoH to assist with implementation.
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Comments welcome!
David.
