Unedifying spectacle sums up My Health Record debacle

The word 'debacle' certainly got a work-out in the media and on the Senate floor this week as Labor mounted a last-ditch effort to have the opt-out period for the My Health Record extended for a full year. 'Debacle' joined 'bungle' as the words du jour, although we were mightily pleased to see at least one 'shemozzle' and the old favourite 'stuff up' joining the fray.

These choice phrases were of course launched at the government over its handling of the My Health Record opt-out process, particularly as the opt-out website and helpline began to suffer under the weight of people wanting to opt out at the last minute on Wednesday. The government was forced to cave in to pressure to extend the opt-out period, as the amendments to the My Health Record Act demanded by the opposition would not pass the lower house until the opt-out period was over.

Of those amendments, some were not entirely necessary. Banning health insurers from using even de-identified data is silly, and the prohibition on them asking a patient's consent to access their record is even more so. It is the patient's record after all, and they should be able to do with it as they like. Besides which, while the fear was that insurers would use the data to hike up premiums on individuals, a practical reason that they want access to the record is to support the nurse-led self-management programs they run for fund members with chronic diseases, and this ban means they will be blocked even from that.

As it happened, our top story this week was about a start-up company that was developing technology to be used for care co-ordination, but that company is likely to go belly up due to this decision. And those who have been around the traps for a while will remember that one of the Wave 2 sites for testing the original PCEHR involved Medibank developing its own Healthbook personal health record, a concept that involved consumer-entered data and a link to the national system. That came to naught (at a cost of $7.5 million) but no one had a problem with the project from either side of politics at the time.

Some of the other amendments to the legislation are good – tightening up access to a child's record for parents with restrictions put on them is a no-brainer, and we are pleased that attention is finally being paid to mature minors – but what was not good was the blatant political point-scoring from our elected officials that we saw on display this week.

This was encapsulated in the unedifying spectacle of the senator representing the health minister in the Senate, Nigel Scullion, doing a deal with One Nation leader Pauline Hanson to give her a “win” and pretend to accede to her demands of a three-month extension to opt-out, she having voted against Labor's move to extend it for a year. And where was Health Minister Greg Hunt himself during this mayhem? He was on a charity walk around Victoria, posting cheesy videos of himself in a hi-vis vest on Twitter.

No one has come out of this looking good, least of all the Australian Digital Health Agency. The information campaign it has run has been disastrous – there are still people who have not heard of the My Health Record, or if they have, they are unaware they can opt out – and there is misinformation everywhere.

Take a look at any comments section on a news website or Twitter or Facebook and you can see for yourself. There are loads of people under the impression that all of their past medical records are going to be automatically uploaded without their permission. Mind you, there are also loads of people who are seriously disappointed that their old records aren't going to be included. Confusion and misinformation abounds.

With a sniff of a federal election in the air, there are also loads of people who might normally be happy to have a record but who are resolutely opposed to the current government and will not have a bar of this thing.

The blame for this state of affairs rests solely with the government and with the agency and their very poor planning and communications strategy. There is a real fear that ADHA's information campaign will not clarify matters any further and we'll be back here again in late January, going through the same hysteria, heightened even further by the probability of an election. What a shemozzle indeed. If you have any ideas on steps the agency could take to at least try to repair this situation, let us know below.

That brings us to our poll question for the week: Who is to blame for the opt-out debacle? The bureaucrats or the politicians?

Sign up to our weekend edition to vote or leave your thoughts below.

Last week, we asked readers if they were impressed with Telstra's foray into the health sector. That's a big no for TH: just 12.5 per cent said yes, while 87.5 per cent said no.

Next week we'll be giving the My Health Record a holiday and heading to Wellington, where the annual HiNZ conference is taking place. There is still no movement on that country's national electronic health record, and they must be watching Australia with some alarm.


0 # Don Gunning 2018-11-19 10:40
A much more nuanced, multi-media campaign. Regular adverts to demonstrate the good track record & future improved uses of the record.

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