MyHealth Record - Megathread

This bill will likely pass the House today.

So waiting for the Senate Committee report on October 8 and then passage in the Senate - all assuming that the Senate does not decide to amend the bill.

As far as it goes, I don’t see anything really controversial in the bill. It’s just that it doesn’t go anywhere near enough towards “Strengthening Privacy”.

4 Likes

I’m wondering if we should all just stop talking about this and do as we are being asked.

I’ve just spent 45 minutes giving my life story yet again to another medical services provider, Ramsay Health. They have an aptly named Ramsay Health Mycare product to use. Terribly confusing at first glance with Mycare vs MyHealth as product names.

It’s just one more place that I’ve had to reproduce all the same details. It is made all the more silly in that some 5 years prior I’d been to the same place with the same specialist and done all of this by hand. No doubt the privacy and disclosure conditons that were ok then have changed and no longer suit Ramsay.

Additionally I’ve needed to agree - reading is optional, their terms of use. The Ramsay privacy agreement is a step further removed from the online process. There is a general statement of complaince with Federal legislated requirements. The commitment to only “take reasonable steps” to protect the privacy of the data must be the industry standard. Not sure how this compares with MyHealth? Does anyone ever take unreasonable steps?

I’d provide a link to all of this, but it appears you need to create a user account to access these docs as you proceed. The T&C’s and relevant privacy statement links appear at the end of the process.
Ramsay generic privacy statement from elsewhere:
http://www.ramsayhealth.com/lib/Privacy%20Policy%20summary.aspx

P.s. There was nothing asking if I had or I wanted the information added to MyHealth record, assuming I have one which I don’t.

2 Likes

Depends whether you want to lose control of your private information. Your choice.

2 Likes

It’s not a choice. It’s a necessary decission. My perception is the level of control has not changed.

Perhaps there is still self diagnosis, self treatment or faith healing or a trip to a cheap surgeon in a near Asian destination.

True anyone can still opt out of MyHealth.
Even public hospitals require admission forms. Happy to hear from those who have refused and still been admitted for anything but an emergency.

This may be more of a ‘getting to yes’ than ‘getting past no’ problem. Although it’s still ok to say NO repeatedly if it makes you feel better.

1 Like

There could be different ways to interpret this report, but regardless it demonstrates how our pollies work and lean (on us and the public service).

4 Likes

Definitely not good. This is what happens all the time both within Departments and across agencies. It’s always about appearing to have the desired outcome, even when it’s not true. Smoke and mirrors.

If this appears cynical, it is, because I’ve been at the receiving end of the demand for refabrication of the evidence.

The same applies to Hansard. The pollies ‘edit’ the Hansard transcript of what they have said to remove any ‘errors’ or make ‘corrections’. The trouble is their interpretation of ‘errors’ and ‘corrections’ is they sanitise and rewrite to make the record more favourable.

5 Likes

I did ring the Opt out phone number, and I was told that there is ‘no cut off date for those already set up, and until the new law/regulation (allowing people already on it to opt out - well I think that’s what is proposed) is brought in there is nothing aI can do about it’ :face_with_symbols_over_mouth::face_with_symbols_over_mouth:

4 Likes

Once you have a record you can cancel it. After cancellation no more records will be added but what is there will be maintained till 30 years after your death or 130 years after your date of birth.

Also from the MyHealth FAQ

"What does the Minister for Health’s announcement about legislation changes mean for me?

The Minister has announced that the government will change the My Health Record legislation to:

  1. Require by law that a court order is required to access a person’s My Health Record – in practice this was already the policy of the System Operator, and no record has ever been released in the past and no government agencies other than the System Operator have access to the system.
  2. Permit the complete deletion of a person’s My Health Record if they choose to cancel it – under the current law, the Agency cancels a record and archives the record for 30 years after the death of the record holder. Under this practice only the System Operator can access this archive and it is not visible to any healthcare providers or the individual."
4 Likes

The Senate Committee report on the proposed amendments has been released. https://www.aph.gov.au/~/media/Committees/clac_ctte/MyHealthRecords/report.pdf?la=en

The key recommendation is that the amendments proceed (no surprise there). There are however dissenting sections from both Labor and the Greens.

4 Likes

I found the dissenting comments in the report the most useful in understanding the issues and progress.

The last three points 1.14, 1.15, 1.16 of the dissenting comments from the AG senators may be a useful summary. Apologies, the iPad has seniors moments and sometimes stops providing the copy and paste function on some pages!

It appears it is possible to make further improvements, however it may need further consumer discussion of the conditions considered misuse and the effectiveness of the legal penalties or remedies that can be applied? These are broad issues.

4 Likes

Because the scope of the review was only the proposed amendments, I don’t expect anything to come of the dissenting sections, which were nevertheless interesting, particularly Labor’s comments regarding the problem of designing a system as “opt in” and then suddenly making it “opt out”.

6 Likes

One of the outstanding concerns seems to be that My Health Record for a child creates a connection between the two parents, or information relating to them, even where, due to alleged or proven domestic violence, such a connection is highly undesirable.

I suppose that My Health Record is not sufficiently embedded with the process for handling DV and AVOs etc., and noone though about that?

This concern isn’t rocket science since the same problem reportedly exists with the myGov portal.

Any governmental data collection system that allows access to various individuals needs to have protections in place for victims of domestic violence.

I don’t think there are any easy answers, any solutions with no losers, but it shows the risk of rushing into things without proper consultation and consideration.

A parent with a fear regarding DV can (for now, maybe) “opt out” of My Health Record, but only if he or she (usually she) knows about it !

4 Likes

In other words, the government’s default “no consent, no security” model isn’t very wise, if further evidence were needed.

2 Likes

Does anyone actually agree with the govt on this? I few in the medical industry it seems but for the rest of Australia?


It’s like demanding we all walk up the down escalator because it will keep you fit and healthy. :persevere:

3 Likes

What is “this”? Opt in? Opt out? Backing away? The report?

If you mean “opt out”, a few people have commented here in favour of it but they may not necessarily have disclosed whether they are in the medical industry.

1 Like

Some who know no better agree. Some who stand to benefit agree.

Reading through the posts, it seems that the plan originated in a report that promised cost savings. Assertions of other aims notwithstanding, that was the focus and remains so to this day.

My Health Record was originally the Personally Controlled Electronic Health Record. The cynic in me suggests that the subject of the record had little or no control - and was never intended to - beyond whether a record existed or not. From what I’ve seen it was never intended to be much of a record either - beyond that necessary to reduce costs.

In the interim, the name has been changed, but the focus and substance remain the same. A minimal record, intended to reduce costs to the government. The most substantial change is a reduction in control by the subject of the record (what little there was to begin with).

Much of the support seems predicated on a belief that the record will be comprehensive and truly useful. From what I’ve read, it’s intended to be no more than a snapshot. There will be no history. When needed most, it may or may not hold needed information. If the information is there, then it may or may not be in a form that’s useful under the circumstances at the time.

Quite apart from all the other concerns I wonder whether, in its current neutered form, it’s worth doing.

Meanwhile, at least they’re consistent:

4 Likes

“My Health Record inquiry backs away from return to opt-in”
So I meant, does anyone actually agree with the government on them backing away from a return to opt in?

1 Like

I think the headline is misleading. Noone in government / in the parliament was saying that there should be a return to “opt in” - so no backing away is occurring. Heaps of people outside the parliament were saying that there should be a return to “opt in” - and noone is backing away from that either. :slight_smile:

The dissenting Labor senators do say that the “opt out” deadline should be delayed so that further problems can be sorted out. As reasonable as that is, that means that they stop short of recommending a return to “opt in”.

1 Like

If my data is to be made available to millions of strangers, and potentially sold (or even given, knowing the capacity of some recent government for utter stupidity), then I expect a cut of the profits at the very least!

Knowing that I won’t get anything from this, I am staying out of the pool. In a medical emergency, I have all relevant information on hand and easily accessible.

2 Likes
4 Likes