NACCHO Aboriginal Health News Alert : #MyHealthRecord slammed in privacy uproar

 ” THE private health records of Australians can be accessed by more than half a million people under the latest bungle with the $2.2 billion electronic My Health Record.

News Corp Australia has learned that the privacy settings on the government’s computerised My Health Record, which lists every medicine a patient takes and records every medical visit and procedure, are automatically set on “universal access”.

From the Daily Telegraph 11 April (see Article 1 Below )

For an extensive NACCHO background brief on Mr Health Records

NACCHO Aboriginal Health ” Opt out ” My Health Records News : Why aren’t more people using the My Health Record

 ” The Australian government has found itself embroiled in a privacy furore, this time for the privacy settings on its MyHealthRecord e-health system.

At issue is the system’s default privacy setting, which is that any health professional treating an individual can access their whole health history.”

MyHealthRecord slammed in privacy uproar : National Media Coverage 11 April

It was ‘absolutely essential to the success of the My Health Record that patients had confidence in the privacy of their information.

It needs to be there for their treating doctor not for everyone else to view,

It should be treated the same as a patient’s paper health record, no one shows that record to their physiotherapist or a mum at work who happens to be a nurse “

Australian Medical Association president Dr Michael Gannon

“Most people are comfortable with the level of access health professionals have to their information.

Broad access to information is part of the design of MyHealthRecord: “it helps overcome the fragmentation of health information … to reduce adverse events and duplicate treatments. This is of particular importance to people who have complex or chronic conditions,

Registered users can’t trawl health data at random: A healthcare provider can’t just provide a name: they need a health identifier number for that person, together with other personal information, to get their records.

He also noted the criminal sanctions that apply to misuse of MyHealthRecord data.”

Speaking to ABC Radio Sydney this morning, Department of Health Secretary Paul Madden said only a tiny number of people have added any access controls to their documents.

 ” The revelation that hundreds of thousands of health practitioners will be given open access to sensitive health data is extremely concerning.

Reports today say that electronic health records will be automatically set to “universal access” under the Turnbull Government’s opt-out scheme, meaning health practitioners will automatically have access to an individual’s full medical history – whether it is relevant to the treatment they are administering or not.”

This means that a dentist or optometrist could know if someone has had an abortion, or their history of mental illness, even if a person has not disclosed it to them.

Shadow Minister for Health, Catherine King, said that this was a concerning development and the Government needed to explain how they would address this.(see full press release below Article 2)

We certainly are encouraging that people look carefully at that because, in a matter of weeks, everyone will have an electronic health record, and any amount of information could be being placed there unaware. And so it’s about ensuring that you know that it exists, you know how to activate your privacy settings, and the access that you desire or wish to be sure of.

But it’s also about getting out that message that there’s still a lot of work to be done, and there’s a lot of curating of the medical information as an important concept between patient and doctor, and there’s got to be someone at the end of the day who is taking clinical charge of the curation of that information

Transcript: AMA Vice President Dr Tony Bartone, Mornings with Ali Clarke, ABC Radio Adelaide, Tuesday 11 April 2017 (article 3 below )

Article 1 : Optometrists and dentists will know if you’ve had an abortion or mental illness in health record bungle

THE private health records of Australians can be accessed by more than half a million people under the latest bungle with the $2.2 billion electronic My Health Record.

News Corp Australia has learned that the privacy settings on the government’s computerised My Health Record, which lists every medicine a patient takes and records every medical visit and procedure, are automatically set on “universal access”.

This means every registered health practitioner in the nation — 650,000 people — can view them, not just the family GP, unless the patient specifically requested to opt out.

Occupational therapists working for an employer, doctors working for insurance companies, a dietitian, an optometrist or a dentist or their staff can view the record and see if individuals have a sexually transmitted disease, a mental illness, have had an abortion or is using Viagra.

“Potentially your employer’s occupational therapist can look at your record and get information they really shouldn’t be getting access to, its confidential data,” says former AMA president Dr Mukesh Haikerwal who was a government consultant on the My Health Record.

The bungle came about because the record was originally set up as an opt in system and when people set up their record they were given the option to set a PIN number to protect the information and determine who got to see it.

Nearly four million people set up a My Health Record under the opt in system but doctors weren’t using it because four years after it was established 83 per cent of Australians still did not have one.

Last year the Turnbull Government trialled turning the failed record into an opt out system.

One million people in the Nepean Blue Mountains area of NSW and Northern Queensland were given a record unless they opted out.

News Corp has now learned only 147 of these one million Australians automatically given a record under the trial set up a PIN number to protect their health information.

“147 My Health Records created in the trials have access controls set to restrict which healthcare providers can see the record, or have controls restricting access to certain documents in the record,” the Department said.

“This equates to 0.0151 per cent of My Health Records automatically created in the trials. This is consistent with the rates of access controls set by those who have opted to register for a My Health Record,” a spokeswoman for the department said.

The My Health Record lists a person’s medications and allergies, doctors can upload a health summary about the person’s health problems, eventually the system will include X-ray results, pathology results, hospital discharge summaries and other data that for the first time can be shared between medical practitioners.

The privacy problem is about to affect everyone because two weeks ago state and federal health ministers agreed to give every Australian a My Health Record unless they opt out.

This decision was made even though the results of the original opt out trial have never been made public.

And it means the health records of every Australian will soon be on open access.

“With only 147 people out of a million setting up privacy settings, you’ve got to ask is that an informed choice to do that?” says Consumers Health Forum Chief Leanne Wells.

“It’s insufficient to write people a letter and give them a pamphlet.”

The Department of Health says “intensive communication activity” was undertaken to educate trial participants, including letters, GP information, local advertising and town hall sessions.

“People have full control over what information is on their record and who can access it,” a spokeswoman for the Department of Health said.

“This includes pin code access to all or certain healthcare providers, removing or limiting access to certain documents and asking providers not to upload information and SMS notifications of who has accessed your record, all of which must be adhered to under the My Health Records Act 2012,” she said.

The My Health record has cost taxpayers $2.2 billion but five years after it was set up doctors and hospital aren’t using it, its way behind schedule.

X-ray, pathology and other test results are not yet available on the record as promised.

$1 BILLION E-HEALTH RECORD NO DOCTORS USE

The e-health record has been plagued by a litany of troubles since its inception.

* When it was launched in July 2012 it was an empty vessel. No doctor or hospital was able to use it and no X-rays or pathology results could be attached to it.

*In 2016 the government sent letters to dead people telling them they were going to set up a My Health Record for them.

* In 2013 technology journalist Kate McDonald discovered that two prescriptions had been added to her e-health record “for drugs that had never been prescribed for me, and were for medical conditions I do not have”.

* A year after it was launched the government was rocked by the resignation in frustration of the two doctors advising it on the record because it was barely functioning.

* Former AMA president Dr Haikerwal revealed the computer system of his multi-doctor practice crashed when he tried to upload patient records on to the e-health record.

And even then he reported that “no one can read it”. Patients who want a hospital or specialist to see their e-health record have to take their own iPad to the consultation because hospitals and specialists don’t have the software to read it.

* When the Office of the Australian Information Commissioner assessed privacy risks to patient information held by seven GP practices in Victoria and NSW it found the clinics were at medium to high risk of breaching privacy laws when using the MyHeath Record.

Passwords were too weak or not changed often enough and, in some cases, a record of the master copy was kept at the clinic, Computers did not have self-locking screen savers turned on.

* The National E- Health Transition Authority (NEHTA) in charge of the record revealed in 2012 it had spent over $5 million on travel and entertaining stakeholders in five star hotels.

This included one event at Sydney’s Intercontinental Hotel where guests were offered steak and seafood and crème brulee. A former policeman was the motivational speaker at the dinner and entertained guests with grisly details about murders while they were eating dessert.

* NEHTA had to cancel a planned roadshow to Malaysia to promote the e-health system at a surgeons’ conference because of the “tight fiscal environment’’.

Article 2 Catherine King Press Release continued

“Given the Turnbull Government’s appalling IT record, Australians have every right to be worried about their rollout of this project,” Ms King said.

“Last year, one billion lines of Medicare data with private claims information were freely available for download in a massive data breach on the Government’s watch.

“They need to tell Australians what is happening, or they risk people losing confidence in the system before it even gets off the ground.”

When Labor originally set up the Personally Controlled Electronic Health Record it was an opt-in system, with users setting up access preferences and controls. Now that the system has moved to opt-out, it seems that the Turnbull Government has not set up the same automatic safeguards.

“The information in these records is too important to be another addition to the Government’s list of health bungles. Australians deserve to know how their information will be protected.”

Article 3 Full Transcript: AMA Vice President Dr Tony Bartone, Mornings with Ali Clarke, ABC Radio Adelaide, Tuesday 11 April 2017

Subjects: My Health Record


ALI CLARKE:  I’d love to know your experiences of it, because it seems that reports today suggest that your private health records now may be accessed by over half a million people. To find out what has happened, I’d like to say good morning to Tony Bartone, the Vice President of the Australian Medical Association. Good morning, Tony.

TONY BARTONE: Good morning.

ALI CLARKE: Why was My Health set up in the first place?

TONY BARTONE: My Health, the My Health Record, was set up and has been part of an ongoing process for almost the best part of a decade now, to get a robust, functioning, electronic medical health record into the public space to assist clinicians in terms of managing all the information and all the data that is available about patients from very many sources in the health system at a central repository, and to assist in the timely and efficient management of the patient’s condition.

ALI CLARKE: So that sounds like a great idea, but there’s been a lot of trouble trying to get an uptake of this.

TONY BARTONE: Essentially that’s correct. What’s happened is that during the process, perhaps ambition, perhaps goodwill or good intent, has led to many different iterations and different avenues being explored, and features. And clearly, still in 2017, we’ve had a number of stumbles along the way.

But we are getting so much closer to what is essentially going to be a revolutionary change in the way doctors can access information and clinical data, and share that clinical data with other people who are managing that patient.

ALI CLARKE: Well, you’re saying we’re getting so much closer. How many people would be on My Health Record now, do you know?

TONY BARTONE: I can’t exactly confirm, but I know the number of people who have got a record is certainly into the many millions now, and that’s been a process that’s been supported virtually over the last 12 months in particular. We’ve had these two trial sites that are referenced in the article where, in those sites, in those regions they are – all the people, roughly about a million people there have been given a record, so essentially, they’ve had to opt out …

ALI CLARKE: [Interrupts] Out of it.

TONY BARTONE: They’ve all been given a record. But around the country, other people can have the opportunity to voluntarily enrol and become part of that. There’ve been incentives to doctors to try and involve patients, but it’s really, at the moment, it’s the lack of robust data and the ability to share that data in a timely manner that is really the difficulty.

For example, many hospital networks around the country still can’t access or share that information into the Health Record because of their own issues with electronic software and hardware in their own facilities. So it really is still looking at only part of the information. It’s almost having one hand tied behind your back, you might say.

And until we’ve got all medical providers and establishments on the same ability to communicate with the same system, we’re still going to be not in a perfect world, and that’s where a lot of the issues remain.

It’s about giving everybody the ability to interact with the system. It’s getting everybody trained and understanding what’s required, and it’s getting also the sharing of information on protocols that are interchangeable and exchangeable between the various providers, and that’s where we’re probably still got a bit of work to do.

It means time, it means more resources. But essentially, it’s positive steps, but it’s still a lot more to do.

ALI CLARKE: So we say more resources. This is a $2.2 billion electronic record. If you have just tuned in to ABC Radio Adelaide, we’re talking about the electronic My Health Record. Tony Bartone is the Vice President of the Australian Medical Association, and he’s with us at the moment.

Now Tony, with regards to that information sharing that you just touched on, that seems to be the main issue of contention at the moment, because reports are around that because of the change of the way that people started this service – originally, you had to opt out, but now they’re setting up in a couple of trial sites, one in the Nepean/Blue Mountains in New South Wales, and the other in Northern Queensland, you could actually – you had to get out of it.

So you chose originally if you wanted to opt in, but now they’re going ‘well, not enough people are on to this record, so we’re going to put you on automatically unless you opt out’. But this has meant, it seems, that private health records now may be accessed by over half a million people. Can you please explain who those people are?

TONY BARTONE: These half a million people, 600-odd thousand, are essentially all health professionals, registered health professionals in the country, and essentially the system’s been set at a universal access setting level, because that was the default position beforehand.

Now clearly the people, once they’re notified that they have a record, they have been given some communication and some brochures to inform them that they can vary that privacy level. But with only 147 or so people having activated that, it means either the message is not getting through or people aren’t aware of the sensitivity and the actual availability of their records.

It’s an opportune time to reflect on the messaging so far, and to reflect upon the time and the information and the education from a patient’s point of view, from a consumer’s point of view, in terms of being aware of what’s out there and what can be on there and who can access it.

ALI CLARKE: So from my understanding, it means that doctors working for insurance companies, or dentists, or optometrists, can access this information.

TONY BARTONE: Essentially, any registered health professional can.

[Talkback callers ring in]

ALI CLARKE: Tony Bartone, I’ll go back to you on that, then. Are you still encouraging people, in your role as Vice President of the Australian Medical Association, to be a part of this?

TONY BARTONE: We certainly are encouraging that people look carefully at that because, in a matter of weeks, everyone will have an electronic health record, and any amount of information could be being placed there unaware. And so it’s about ensuring that you know that it exists, you know how to activate your privacy settings, and the access that you desire or wish to be sure of.

But it’s also about getting out that message that there’s still a lot of work to be done, and there’s a lot of curating of the medical information as an important concept between patient and doctor, and there’s got to be someone at the end of the day who is taking clinical charge of the curation of that information. And that’s a time-critical and also laborious process.

As [talkback caller] Dr Danny was saying, it depends on the amount of information, the quality of the medical information, but also – if you can imagine multiple different sources placing information into your electronic health record from different sites – that the timeliness and the synchronicity needs to be looked at. And as I say, the curation of that file is critical, and that’s what we’re talking about. More resources, both in terms of patient and consumer information and education.

But also in terms of time to spend with your nominated curator, medical curator – most often your GP, who’s obviously got the best concept of longitudinal care and idea of your past medical records – to take the time to curate that file into a really robust, valuable document to allow the portability that Dr Danny was talking about, to allow the break glass safety features that Dr Danny was talking about, that would be in terms of an emergency department miles away when you’re on holiday. It’s about the access to the appropriate information at the appropriate time to ensure the best outcomes for our patients.

ALI CLARKE: Well, thank you very much. Dr Tony Bartone, Vice President of the Australian Medical Association.


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