MyHealth Record - Megathread

A perspective from the US:
https://well.blogs.nytimes.com/2016/03/31/let-patients-read-their-medical-records

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A couple of polls of medical professionals:

https://www.doctorportal.com.au/mjainsight/2018/44/why-is-the-my-health-record-question-so-difficult/
My Health Record: staying in or opting out?
Opting out (73%, 284 Votes)
Staying in (27%, 103 Votes)
Total Voters: 387

https://www.doctorportal.com.au/mjainsight/polls/?poll_page=3
My Health Record will improve patient outcomes
Strongly disagree (41%, 159 Votes)
Disagree (26%, 102 Votes)
Neutral (15%, 59 Votes)
Agree (10%, 38 Votes)
Strongly agree (8%, 31 Votes)
Total Voters: 389

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Amendments being debated in the Senate today.

Looks like the government is attempting to amend its amendments in order to get the second batch of amendments in with the original batch of amendments.

Tick tick tick.

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My Health Record just Tweeted the following advice:

“The opt-out period ends at 3:00 am AEDT on Friday 16 November. After this time, it will continue to be Australians’ choice about whether they would like a #MyHealthRecord. A My Health Record can be cancelled at any time.”

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Last minute rush on the opt-out web site?

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We’ve heard some reports of people being unable to opt out due to a ‘transaction error’. Clearly there are some issues with the phone hotline too

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I tried two other browsers, both getting “The server was unable to fulfil the request”, before finally succeeding with Internet Explorer.

It seems we now have until 31 January:
https://www1.racgp.org.au/newsGP/Professional/My-Health-Record-out-out-extended

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Thanks for the update @n3m0. Hopefully that takes the pressure off for those still trying to opt out

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Perhaps we need to examine the assumptions inherent in electronic personal records:

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At least if it had been opt-in, those without internet access would not be opted in without their knowledge and would not be able to opt themselves in - and hence they would have nothing to manage. Just another problem caused by changing from opt-in to opt-out. However there’s a bigger problem there, which is perhaps what you are alluding to.

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Seems to be correct. Pauline Hanson moved it. It was agreed to by the Senate. The government has agreed. The web site ( https://www.myhealthrecord.gov.au/for-you-your-family/opt-out-my-health-record ) has already been updated.

The amendments still haven’t been made though. With appropriate political will there is time to finalise those amendments, modest as they are, in late Nov / early Dec (after that there are no more sitting days before the latest deadline).

Some kudos to Minister Hunt for being prepared to lose face and move the deadline again. However the system remains a dog, and he hasn’t done nearly enough to get me on board.

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Being dealt with by the Senate again today. Looks like the bill has passed the Senate but with a bunch of amendments. Details not available yet (unless you were watching the Senate live). Now back to the House to see whether the amendments are supported, I think.

I can’t even say I’m surprised.

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This cuts across My Health Record (MHR) in a number of ways.

  • it’s an indicator of the promise of a digital health records system. Aggregated data can be mined to enhance health outcomes for individuals and the population.
    Sadly, MHR is not that system. I’ve recently seen it described as a poorly-implemented document management system, not a health records system.
  • it’s a warning of what will happen when treacherous totalitarian capitalists inevitably sell us out (privatise system management).
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If an insurance claim (particularly in the case of travel) is made for medical reasons, an insurance company currently requires a medical certificate from your doctor. What concerns me is that in future it will become a condition of the policy (yes, in the fine print) that you will have to provide the insurance company with your MyHealth Record (assuming you have one) in preference to a doctor’s certificate. This then will allow the insurance company to go ‘fishing’ through your past to see if they can find anything to use in order to decline your claim on the basis of an ‘existing condition’, no matter how obscure the connection. The government must make it law that insurance companies cannot compel a person to disclose their Record as a condition of making a claim.

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The most relevant question here may be who actually owns the contents of your MyHealth record?

Currently any records relating to a persons health I’m assuming belong in one way to the service that created the original document (eg diagnostic image and report, Medical Professionals advice/prescriptions etc) and the patient who the content relates to.

The second part to this is does saving a portion of a personal medical record to MyHealth change in any way the ownership of the content?

Given an individual can set and control access or give permission to add content, it would seem logical that the owner of the content in MyHealth is the individual. As each item or portion also relates to an agreement between the individual and service provider it would also be reasonable to expect it is protected against use for any alternate purpose other than the original referral, request etc.

Would any insurance company have any greater right to claim access to the information held in MyHealth than it has to the original documentation held in a medical practice?

I wonder why Travel Insurance and a pre-existing condition is any different to the same for life insurance, income protection insurance or just plain health insurance?

You may be wrong about that i.e. there may be no means of stopping a healthcare provider from adding content. You can however stop healthcare providers from reading content.

These are inconvenient questions. :slight_smile:

Traditionally if it were commentary from a doctor etc., the doctor would sort of own it. It would exist only in the practice, in their records system, and you would not even have access to it.

With MHR you can add your own comments. Ownership is unclear.

It is an interesting point. Me being wrong is Ok.
I relied on an observation from recent personal dealings with Medical service providers. All forms had a tick box asking if I wanted the information added to MHR. This says control to me, but perhaps they were just being polite?

If adding data is an open event, it leaves the system exposed to errors due to incorrect information added to a personal record. This would imply there is a responsibility on each individual to maintain their own records. Something many of us do not have the ability to do.

Having lived in 4 different communities in the previous ten years my medical history is scattered across 5 practices. Two of those had zero interest in helping forward history when I moved. I can count a further 6 if I consider each time we have moved town or city, plus at least three more related to employment requirements. Perhaps it does not matter?

Perhaps the government could legislate to put the responsibility on the medical professionals to maintain a comprehensive record for each patient. Secondly for the practice to be required to forward in full the record to the next provider when you change. Finally to have a registration system where each patient must nominate a principal provider so that any casual need to go elsewhere results in a record being able to be forwarded to the nominated principal provider. This of course would place the responsibility to keep your records and also security of that with the medical practices. And limit access to those records by the concerned patient.

I’m sure I’ve been jabbed for tetanus twice as often as needed. Tested for blood lead levels and chest X-ray often enough to emit a faint nightly glow. Each new practice has looked at my age, my health cover and went to town just to be sure they have their own reference set of data to bench mark my health. I have now stuck with a practice 65km each way drive. I’m not changing another time!