The advocates who want you to share your medical data online

Experts explain compelling reasons to use My Health Record platform.

The advocates who want you to share your medical data online

As the chatter grows over whether you should let the Government store all your personal medical information in the cloud, many voices have been raised in support of the My Health Record (MHR).

Among peak bodies to have thrown their weight behind the MHR platform are the Consumers Health Forum, Palliative Care Australia, Aged and Community Services Australia, Leading Age Services Australia and Carers Australia.

Also applauding the platform is health policy Professor Jim Gillespie, of Sydney University, who says the My Health Record is a “step towards empowering patients”.

Writing in The Conversation, Prof. Gillespie said most critics of the platform cite cyber security risks. However, he points out that during the five years that the MHR’s precursor – the Personally Controlled Electronic Health Record system (PCEHR) – has been operational, no breaches have been reported.

“Rather, examples (of breaches) are often drawn from commercial operations which have succumbed to the temptation to commercialise data – an offence that could lead to prison under MHR,” he said.

Meanwhile, the Consumers Health Forum (CHF) says the advantages of a single electronic databank such as My Health Record (MHR) are significant, particularly for those with complex and chronic conditions and the elderly.

“MHR will provide a single repository for people’s medical records, housing details such as their medical treatments, current medications, tests, scans, allergies, immunisations and referrals and their end of life wishes,” explained CHF chief executive Leanne Wells.

“It will enable authorised health providers anywhere in Australia to see (a patient’s) record, facilitating prompt attention and avoiding the need for repetition of your health history and duplication of results. Importantly, individuals will be able to control what parts of their health record can be viewed by health providers.”

It has been argued that in an emergency, information on MHR could save a person’s life.

“What is important to keep in mind is that MHR offers to healthcare the potential for the sort of digital benefits we take for granted now in virtually every other area of modern life: instant and comprehensive communication of information,” she said.

While Ms Wells said concerns about the security of personal health information are to be expected, she added that the Government and the Australian Digital Health Agency had instituted systems to protect patient privacy.

“It is important that people do not regard MHR as an imposition. Rather, the arrival of personal electronic health records offers every individual a fresh opportunity to have greater control and awareness of their healthcare.”

Palliative Care Australia (PCA) believes MHR will allow health professionals to provide faster and more efficient care for people and their families.

PCA chief executive Liz Callaghan said: “People accessing palliative care services often have complex needs and their multidisciplinary care team may be located across many sites. The care team often comprises doctors, pharmacists, nurses and allied health professionals. MHR makes it easier for those professionals to share information about medications, test results and care plans.”

Aged and Community Services Australia chief executive Pat Sparrow believes MHR is good news for older Australians, as well as aged-care facilities and their staff, carers and family members.

“Older Australians need to be supported in healthy ageing and this streamlined approach to information sharing promises to improve the flow of information from hospital to home to residential aged care and ultimately contribute to the quality of care for an individual,” Ms Sparrow said.

Leading Age Services Australia chief executive Sean Rooney agreed, adding integrated information would especially benefit those in residential aged care.

“By enabling information sharing between the various parts of the Australian health system, digital health has the potential to enable programs and initiatives that integrate care, wrapping it around the needs of patients,” he said.

Carers Australia chief executive Ara Cresswell said the platform would make carers’ jobs easier and delivery of care safer.

“It can lessen the stress of having to remember details of the diagnoses and treatments of others, and help prevent adverse medication events,” she said.

“The ability to upload a patient’s end-of-life preferences can also lessen the distress of those forced into making very difficult decisions on behalf of a family member not able to communicate their own wishes.”

Do you believe My Health Record would be a convenient way to store and share your personal medical information? Are you already signed up to the Personally Controlled Electronic Health Record, and if so, has it been useful in any treatment you have received?

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    COMMENTS

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    David
    20th Jul 2018
    10:43am
    To me the benefits of My Health Record (MHR) far outweigh the risks.
    Sure, there are some risks with data security/privacy, but then there are also risks with internet banking, online shopping etc.
    If you are in great health, always see the same doctor and never travel beyond your town, the advantages of MHR are not that great, but if you travel frequently throughout Australia like I do, it's reassuring to know that your up to date health records can be accessed by any medical practitioners to ensure that they are well informed to give you the best treatment or advice.
    Kathleen
    20th Jul 2018
    10:50am
    I have already agreed. It is too handy being able to have your records available for doctors and hospitals whereeer you travel or visit to have your records. You could be in an accident and unable to tell your medications and health issues and then they can put that up and look after you.
    We already are tracked and followed so who cares if it is a risk because we cannot avoid that anyway. Ads are shaped by my online visits and appear on Facebook and in my games,
    The phone rings because someone has sold my number when I have filled in a form or bought a ticket.
    There is no privacy now so what does it matter if there is a risk with having the benefit of your medical records available which could save your life or help your family.
    Florgan
    20th Jul 2018
    11:14am
    I think the risk is that someone can hack your records change your info
    Or your info can mysteriously change and then when your in an accident , your given the wrong drugs etc !!!
    Concerned
    20th Jul 2018
    2:51pm
    I think the other risk is it can be and information you don't wish to be shared such as the Centrelink line that they have partnered with the AFP Will the AFP decide to partner with the health records. Sorry but I will not be sharing.
    Old Geezer
    20th Jul 2018
    11:14am
    Just delete everything you don't want any one to know off your record. That's what I am going to do.
    Florgan
    20th Jul 2018
    11:15am
    If we can go in and delete info, how hard would it be for hackers to go in and delete or change our info
    KSS
    20th Jul 2018
    3:23pm
    You cannot delete a document or the account created for you. You will be able to prevent people accessing certain documents eg test results, X-rays, particular records but you cannot remove or delete them. You have until 15 October to opt out of having a record. If not then a record will be created.
    Rosret
    21st Jul 2018
    12:43pm
    I understood you could "delete" records if you had opted in however they are only hidden not deleted.

    "How to murder your spouse!" Change their record!!!! Oops didn't mean to change the blood type A to a B.
    HarrysOpinion
    20th Jul 2018
    2:35pm
    **Do you believe My Health Record would be a convenient way to store and share your personal medical information?
    - Only with medical professionals authorised by the patient.
    - What about the police booking drivers for driving while on prescribed medication? No to mention the possibility of being booked for driving under the allegation that the driver was in control of a motor vehicle whilst on drugs…that have yet not been invented yet? All the police have to do is get immediate access to your medical records and….bingo!
    - How do you protect medical records privacy when individual carers will have access to private medical information? Carers come and go. When they go they take private medical information with them and if they find a way to make a buck out of such information what are the chances they will on-sell it?
    - Remember the days of customer mailing lists? No customer permitted their name, address and phone number to be sold off to direct marketing agencies but, their details ended up on such lists
    -
    **Are you already signed up to the Personally Controlled Electronic Health Record, and if so, has it been useful in any treatment you have received?
    - Yes.
    - When I needed to transfer my medical history from one doctor to another the first doctor wanted $20 for transferring the info.
    - The 2nd doctor was either computer illiterate or the information was not provided

    **“However, he points out that during the five years that the MHR’s precursor – the Personally Controlled Electronic Health Record system (PCEHR) – has been operational, no breaches have been reported”…
    -So, no breaches have been reported…publicly…yet to date…that we know of…until it becomes apparent that someone found a way to…blackmail…extort…to deny medical insurance or other form of insurance…to deny icences…to deny employment…etc, etc, etc

    **“the Government and the Australian Digital Health Agency had instituted systems to protect patient privacy”…
    -except from… the government agencies?
    Rosret
    21st Jul 2018
    1:00pm
    https://www.digitalhealth.gov.au/about-the-agency/digital-health-cyber-security-centre/Patching-IT-Professionals-December2017.pdf

    “Healthcare records are a particularly attractive target for cybercriminals,
    since they hold almost all of the information required for identity theft, social
    engineering, financial fraud, tax fraud, insurance fraud, and medical fraud.”

    "On Friday 12 May 2017, over 230,000 computers in 150 countries were impacted by the Wannacry ransomware attack. It also impacted over 70,000 devices connected to operating systems including mobile devices and medical equipment.

    At least 81 healthcare organisations, 595 general practices, five hospital emergency departments and 1,220 medical devices used by the National Health Service in the United Kingdom.

    The attack targeted computers running the Microsoft Windows operating system and was successful in infecting systems running older versions that were no longer supported.

    Two months prior, Microsoft had released a patch that addressed the security vulnerability that was exploited in the Wannacry incident.

    It is estimated that 19,000 appointments were cancelled and the financial cost of the incident was in excess of $4 billion."
    Charlie
    20th Jul 2018
    5:38pm
    Did I hear "end of life wishes".. That"s one I prefer to keep till the end of life
    GeorgeM
    20th Jul 2018
    11:13pm
    The Consumers Health Forum does NOT represent me. Their reasons are naive, as they ignore the reasons against an automatic Opt-in. If people choose to Opt in that's fine, it's their decision. However, Opt-out should have remained the default.
    a. Govt deciding to share people's personal health data to a vast number of health professionals without having obtained specific permission for it is BAD legally, and I hope some Legal firm / QC will challenge this massive breach of privacy for those who never exercised their choice.
    b. Data sharing with research bodies, who are mostly funded by Pharmaceutical firms, is also a bad idea - it is only a matter of time till data will get passed on and sold.
    c. Wonder if they are Outsourcing the technology (whether to IBM who stuffed up the Census, or to one of those Indian firms) - only a matter of time till their systems fail and data breaches will be reported. Let's now keep a look-out for more scam calls from scammers based on their use of your health data.
    d. Finally, let's just wait till someone hacks into the database - can they actually stop Putin, or the Chinese? Maybe USA should hire these full-of-themselves "experts" from here!
    HarrysOpinion
    21st Jul 2018
    1:05am
    Well, well, well folks, what do we have here?
    Read on:-
    Singapore health database hack steals personal information of 1.5 million people, including PM
    Posted about 3 hours ago

    A major cyberattack on Singapore's government health database has stolen the personal information of about 1.5 million people, including Prime Minister Lee Hsien Loong, the Government says.
    http://www.abc.net.au/news/2018-07-20/singapore-health-database-hack-steals-details-of-1.5m-people/10019492
    Rosret
    21st Jul 2018
    12:37pm
    From the article:
    "It was not the work of casual hackers or criminal gangs," the joint statement by the Health Ministry and the Ministry of Communications and Information said."
    In other words it was organised crime - a very serious breach.
    Rosret
    21st Jul 2018
    2:59pm
    An interesting read on the Singapore cyber attack. It was a front-end user breach.
    https://www.healthcareit.com.au/article/hackers-breach-15-million-singapore-patient-records-including-prime-ministers
    HarrysOpinion
    21st Jul 2018
    5:49pm
    In other words, Rosret, who ever it was, they stole 1.5 million health data of people's personal medical information.
    "While Ms Wells said concerns about the security of personal health information are to be expected, she added that the Government and the Australian Digital Health Agency had instituted systems to protect patient privacy"
    Possibly,the Singaporean pundits assured the people of Singapore in more or less the same words.
    But, there you are! Hackers proved them wrong.
    KSS
    21st Jul 2018
    8:10pm
    You might be interested in this article about the architect og MyHealth and what he did in the UK's now defunct care,data:

    https://www.msn.com/en-au/news/australia/%E2%80%98no-one-who-uses-a-public-service-should-be-allowed-to-opt-out%E2%80%99-my-health-record-head/ar-AAAdO4g?ocid=NL_ENAU_A2_20180720_4
    HarrysOpinion
    22nd Jul 2018
    12:46am
    KSS- thanks for the referral to this article.

    One of the points I made was of this concern.

    "Care.data, which was brought to a shuddering halt in 2014 after widespread criticism over the SALE of patients’ private data to drug and INSURANCE companies, then scrapped altogether in 2016"

    "Sue Dunlevy who correctly pointed out the strong risk to privacy in the My Health Record system. The statement repeatedly criticised Dunlevy, accusing her of “dangerous fearmongering” and being “misleading and ignorant”.

    -Words of a demagogue and a bully ! -

    - In light of what's happened in Singapore I'd say Sue Dunlevy was 100% correct-


    "
    Rae
    22nd Jul 2018
    8:57am
    There is no privacy any longer. Big Brother is watching and listening.
    If you opt in to smart tv or walk in the city or catch a plane it's recorded.
    Your phone provider knows where you are.

    Satellites can track anyone and zoom in on a fly on the hand of a guy in a park.

    The supermarket knows what you buy, where and when if you use their loyalty card or a card to pay with.

    On and on. Opal knows where you go, so do the toll operating systems.

    The Chinese are currently spying on everyone and offering rewards or fines for behaviours.

    Worrying about privacy is no longer relevant. It's like Climate Change and overpopulation. Way too late to worry about.

    When the calls come or the advertisement pops up. Just ignore it.
    HarrysOpinion
    22nd Jul 2018
    2:10pm
    Rae- if, "Satellites can track anyone and zoom in on a fly on the hand of a guy in a park"???

    Why is it then,that satellites did not identify the flight path of MH370 so that they could backtrack its movement to the point of its crash site or track MH17 to the point of missile firing and provide photo evidence of the actual missile launcher at that time firing the missile including the faces of the personnel involved?

    There is a website https://zoom.earth/#21.186973,118.322754,6z,sat,am,2016-11-03

    One can go back in time proximity but it's a public site so they don't reveal everything that a satellite might have recorded and the clouds hide a lot.

    Mind boggles !

    I accept your notion in principle but the technology to zoom in on a fly on the hand of a guy in a park needs to be improved.


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