8th Nov 2018
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System crashes as My Health opt-out deadline nears
Author: Janelle Ward
my health record

When the opt-out period for My Health Record (MHR) opened on 20 July, suddenly it seemed the whole nation cared strongly one way or the other. So much so that the three-month window to opt out was extended to four months to allow extra time for debate.

That window is set to close next week, with calls for another extension falling on deaf eras, and the pressure on the opt-out helpline in recent days has reportedly been immense.

If you want to opt out, go to this government website link.

The aim of MHR makes sense – to allow you and your healthcare providers immediate digital access to your medical history. Emergency treatment can be administered with far more certainty if medical staff are aware of any issues.

The fears? That a wealth of personal information might be hacked, that privacy is not guaranteed and that agencies permitted to access data could pass on sensitive information.

So how far have we come over the past nearly four months?

The Senate Standing Committee on Community Affairs report into MHR was released in late October and recommended several changes relating to security and privacy concerns. Further amendments, including increased penalties for anyone misusing patient records, were announced by Health Minister Greg Hunt on Tuesday.

The changes, which are expected to go to the House of Representatives on 26 November, included:

  • that access codes be applied to each My Health Record as a default and that individuals be required to choose to remove the code; and ability to override the code should be available only to registered healthcare providers in extraordinary and urgent situations
  • an extension of the period for which a MHR can be suspended in the case of serious risk to the healthcare recipient, such as in a domestic violence incident
  • that data likely to be identifiable not be made available for secondary use without an individual's explicit consent
  • current prohibition on secondary access to MHR for commercial purposes to be strengthened
  • that no third-party be given access to an individual’s record without the patient’s explicit permission
  • that access to MHR for data matching between government departments be explicitly limited to a person's name, address, date of birth and contact information
  • that no cached or back-up version of a record can be accessed after a patient has requested its destruction
  • that the opt-out period be extended for 12 months.

The recommendations were supported by Labor and Greens committee members, but not by Coalition committee members.

The latest official data shows that 1.147 million people had opted out, up from 900,000 on 12 September. However the opt-out helpline was deluged with callers on Tuesday and blamed a technical glitch for a system crash.

The cost of an advertising campaign to promote MHR, according to the Australian Digital Health Agency (ADHA), had blown out from $5.45 million to $10.45 million after the opt-out period was extended.

The total communications budget for MHR was $27.8 million.

To refresh your memory, we present key points for staying with MHR and the concerns that may prompt you to opt out.

In YourLifeChoices’ 2018 Retirement Matters Survey, we asked members if they intended to stay in MHR or opt out. Of the 4820 respondents to this question, 64.5 per cent said they would stay in.

The key reasons given were:

  • helps all medical professionals know my full medical history
  • reasonably confident that my records will be secure and it will be useful for various medical professions to have access
  • good to have my rare health issues easily accessible if I'm not being seen by my usual doctor.

Those who said they would opt out were overwhelmingly concerned about the privacy of their record. Typical responses were:

  • don’t trust the scope of it or the security
  • don’t believe it's completely ethical at this point in time
  • not secure and too many government agencies can access it.

The case for staying in MHR …
The Consumers Health Forum (CHF) says the advantages of a single electronic databank are significant, particularly for those with complex and chronic conditions and the elderly. CEO Leanne Wells says: “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 in virtually every other area of modern life: instant and comprehensive communication of information.”

She says increased penalties, stronger safeguards against domestic violence, new protections against employers compelling employees to show their MHR and prohibition on use of MHR data by insurers were big improvements to the scheme.

Health policy Professor Jim Gillespie of Sydney University, says MHR is a “step towards empowering patients” and that in the five years of the precursor – the Personally Controlled Electronic Health Record system (PCEHR) – no security breaches were reported.

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 says: “People accessing palliative care services often have complex needs and … 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.”

Why you might opt out
Former AMA president and now member for Wentworth Dr Kerryn Phelps has condemned the way some third parties can access MHR. She says the secondary use or sale of patient data remained unresolved.

MHR is linked to a patient’s MyGov account, which stores personal information from interaction with Centrelink, Medicare and the Australian Taxation Office (ATO).

Patients can block certain parties from seeing their data with an access code, but you only have an access code if you explicitly ask for one and that code can be overridden in a medical emergency that requires life-saving treatment. Legal experts warn that individuals could be coerced to hand over their codes to potential employers and insurance companies.

Nigel Brew, director of foreign affairs, defence and security, said that under Section 70 of the My Health Records Act 2012, the ADHA can disclose health information when it “reasonably believes” it is necessary to investigate or prosecute a crime, to counter “seriously improper conduct” or to “protect the public revenue”.

Have you made your decision? Do you think anything has changed over the past four months?

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    COMMENTS

    To make a comment, please register or login
    Paddington
    8th Nov 2018
    11:48am
    Not opting out! I have heard the arguments but I believe that the benefits outweigh the risks. For hospitals and doctors to be able to access my records is a great aid for them and me. I am pretty sure my details are available already as is evidenced daily by ads aimed at me from my research and phone calls etc.
    Stephen H
    8th Nov 2018
    12:02pm
    I'd like to opt out, because I'm worried that my health information might go to organisations I wouldn't want it to.
    But I'm already in! So I can't opt out. All I can do is "cancel" my record. OK, that sounded good.
    But before I did, I went to their FAQ page
    https://www.myhealthrecord.gov.au/for-you-your-family/howtos/cancel-my-record
    and found this disturbing information:
    "When you cancel your record:
    • Healthcare providers will not be able to upload documents or access the record - even in an emergency.
    • You, or your representative can only see the record by making a request to us.
    • Once your record is cancelled, it will be kept for 30 years after your death or, if the date of death is unknown, for 130 years after the date of your birth.
    • It may be accessed by us for maintenance, audit and other purposes required or authorised by law."
    Points three and four make me wonder -- what's the point of cancelling?
    If all my health information (up till the date of cancellation) is going to stay on their system as long as I live and then some, I might as well leave it active and thus accessible to health care providers.
    KSS
    8th Nov 2018
    12:46pm
    The problem is Stephen H is that you cannot delete the record, only hide it from view which is why it is still there lurking in the background.

    However, if you opt out BEFORE the cut off date, no record will be created so there is nothing to delete. I opted out at the first opportunity a couple of months ago. You can always change your mind later.
    Rosret
    8th Nov 2018
    8:26pm
    Your record will be quarantined.
    You don't want them access your data in an emergency. You want the health workers to ask you and double check.
    You don't want your family to have access to your records. A GP will give you a list of their medication or relevant data should you be a carer.

    We have managed very well up until now and relying on 'my health record' to make life saving decisions WILL culminate in more accidental medical deaths due to errors than we have at present.

    What percentage error is acceptable with this system I wonder?
    KB
    8th Nov 2018
    12:59pm
    I have health issues but have opted out earlier. There are security risks. Data will be left for years for people to be able to scam your details. There is no valid reason as to why the government should be in control of health records full stop.. Health record is really only about the government wanting to take control of our lives,
    BDW
    8th Nov 2018
    3:38pm
    I think it’s like most things ... made with good intentions & I can see a lot of benefits ... especially case studies etc. However ... there will be people out there who wish to use it for evil ... this type of crime has happened since the beginning of time! I’m staying in & trusting our data can be protected ... if not initially longer term for the sake of health!
    Lothario
    8th Nov 2018
    5:51pm
    What a waste of taxpayer money. Typical of so many ill conceived projects by useless public servants and politicians
    Rosret
    8th Nov 2018
    8:17pm
    It isn't about the security of the system itself. It is about the end user and privacy.

    It is about the total lack of doctor/patient confidentiality especially if parents do not opt out their children. We have decided as a nation that our children have no rights whatsoever - for the rest of their lives +.
    Spouses will have no medical privacy.

    Your medical information is being passed on to medical researchers and instead of using primary source information they are using secondary data and making statistical assumptions.

    The medical record information will be assumed accurate and their will be no record of medication that were taken or were not taken. No record of medicines that proved unsatisfactory and were terminated. No record of scripts that were prescribed and never needed etc.

    Decisions will be made on the statistical averages of conditions like smoking, obesity, etc.
    Medical ancillary staff will be reduced as a result of this $2billion system that is being introduced - not for us but to save welfare dollars.
    The list goes on and on.

    The primary breach of privacy is that which software apps require the user to agree to a privacy policy. It seems our government is above the law.

    I find it amazing the Facebook have to face the equivalent of a Royal commision for breach of privacy and our government just takes our data and posts it online! So naive. Very word we write is being analysed.
    Rosret
    8th Nov 2018
    9:11pm
    Strange sprucking technique we have here?
    Pretend you are saying you have concerns and then say how you want to stay with it anyway. Got to love blind faith.

    The impact of Myhealthrecords won't really impact we oldies. However our records will most definitely have a far reaching impact on our descendants.

    So if you have any illnesses that have a social stigma or may affect your family's employment- Opt out - for your children's sake.
    Paddington
    8th Nov 2018
    9:25pm
    What about the opposite benefits for our descendants which would make having family history available? For example, our daughter is having a medical problem needing diagnosis and we are asking questions like, when did grandma have a heart problem and what exactly was it? It is very scary when something is wrong but how to help them evades everyone because it is difficult to diagnose.
    Your last comment has no meaning for me. My complaints and their history would be invaluable for my grandkids later on.
    Rosret
    9th Nov 2018
    1:22pm
    Then you have no personal information that you don't wish to share with the world. That is wonderful.
    Any family history of significance we already have documented and it is kept private within our family and shared with the medical profession if necessary.
    Paddington you are working on the premise we will always live in a "safe" world. How long do you think Australia will be as it is now? The way we are giving away our right to privacy - not very long.
    Luckily at the moment we have a choice. However it should have been Opt in and not Opt out.
    I wonder how long it will be before Slater and Gordon have their first class action against Myhealthrecord.
    Paddington
    8th Nov 2018
    9:26pm
    Research is a big plus that comes to mind. Comparing so much data would be invaluable.
    Rosret
    9th Nov 2018
    1:31pm
    No, its not. The data comes from a secondary source and the personal records are not accurate.
    It was only a few months ago when they posted an article on TV boasting they had used medicare data to link childhood obesity to more trips to the doctor.
    They only know the weight of a child at the time it was taken. Children change weight monthly.
    What they are doing is using statistical data to make assumptions - and often the wrong assumptions.
    Once they have made these assumptions, given the information to the media for a shock one line heading, the insurance companies and employers see the article. All of a sudden obese teenagers won't find employment and insurance premiums will go up. - So we divide a community and increase the poverty that probably caused their obesity in the first place.
    Researchers can find their information ethically - not by theft.
    Paddington
    9th Nov 2018
    11:48pm
    Rosret, of course it would help. It would paint part of the picture and researchers know how to sort data. You have qualitative and quantitative data. They don’t just use one method. They do studies as well. It all helps. It could highlight something that they then pursue even if it is to eliminate and sort.
    Articles are not evidence. What you described is not scholarly work and findings.
    Rosret
    10th Nov 2018
    10:13am
    You miss the point Paddington.
    They passed on the information to the media.
    There is a correlation between obesity and the no. of doctor visits. Therefore - insurance companies increase premiums on obese people. Therefore - employers draw a correlation between weight and absenteeism.
    The media love headlines despite the consequences. Myhealthrecord is aptly name to deceive. It is My meaning Our - the government and whoever else they should choose to share it with.
    Its called loss of doctor /patient privilege.
    People will avoid going to the doctor if they know others are going to know their medical condition then act upon the conclusion and even more people will become ill because of it.
    RnR
    14th Nov 2018
    4:08pm
    Saw my GP the week before last. Asked him to upload my records to My Health where I have been registered since its inception. Went in to check today ... no clinical records available.

    No wonder I keep my own. So disappointing.

    If you want to get out of it, found this link ...

    https://www.myhealthrecord.gov.au/for-you-your-family/howtos/cancel-my-record
    Ian
    15th Nov 2018
    10:17am
    Something is not right. On the news today 15/11/18 the health minister said 'you can op out or in at any time' ??? if so what is the rush now???
    Ian


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