Consent and the Clayton's communications campaign

The Australian Digital Health Agency did a pretty good job publicising that fact that its CEO, Tim Kelsey, would be addressing the assembled hacks and no-hopers of the nation's media at the National Press Club in Canberra on Thursday.

Mr Kelsey gave a celebratory, forward-looking speech, outlining a brave new world of digitally enabled healthcare in which the hum and the whirr of the fax machine is finally silenced. He got a nice round of applause, a genial introduction from NPC president Sabra Lane and then a gentle enough opening question about the difficulties US doctors were finding with EMRs.

Then News Corp's Sue Dunlevy popped up and decided to give Mr Kelsey a bit of a grilling. Ms Dunlevy seems to be convinced that there is a conspiracy to keep the horrors of the My Health Record a secret from the public, asserting that the agency had buried the announcement of the opt-out period beneath the pomp and circumstance of the nuptials in London last week.

She also seems convinced that there will be no national advertising campaign to inform the punters of opt out. We have checked this in the past and double-checked it on Thursday, and discovered that while there will be paid radio spots, print ads, cinema ads and some ads on regional television, there will be no paid advertising campaign on national TV. There won't be any letters sent out to citizens either.

We were assured that national TV advertising doesn't work, that people just click the mute button while they make a cup of tea, and that all of the evidence proves that it doesn't work for this sort of campaign.

Instead, in addition to the paid spots in local and regional media, there will be a big social media campaign, targeted community campaigns being run by the PHNs and the jurisdictions, and an awareness campaign for healthcare professionals, which is currently underway.

We remain utterly unconvinced, I'm afraid. We remain firm in our belief that an initiative of such vast expense, such great import for our nation and such technological power as a universal electronic health record requires an ad on the telly, particularly during popular shows like the news, Sunrise and MasterChef.

We also learned that there won't be a repeat of the mass mail-out of letters to participants in the opt-out trials, which infamously resulted in letters to dead people, a story Ms Dunlevy herself broke. Apparently this can prove upsetting for some people although again, it's our perhaps old-fashioned view that most people would expect to get a letter from Medicare about it, even if they do chuck it in the bin.

There was also confusion during the NPC Q&A about consent and what exactly would appear on the record. Mr Kelsey did clarify at a one stage that sensitive data such as abortion information or HIV results would not be uploaded without the patient's consent, but these misunderstandings about the record are very common in our experience.

We know of consumers who are under the impression that the government is going to be able access every GP's computer and extract their past history, some of which they'd obviously prefer to keep private. On the other hand, others have complained of their disappointment that their old hospital records won't be uploaded, and question the value of having a record at all.

There are also some health professionals who believe that the nominated GP has to “curate” all of their patients' records “in the cloud”, even while the patient isn't there. And if the agency is relying on GPs and pharmacists to sell this thing for them, they are barking up the wrong tree.

Some GPs are all for it, some are completely against it, but all the rest are far too busy with patients to be worrying about it. Same goes for pharmacists. The peak organisations may be on side, but that's what they're getting paid for and it's apparent there is a lot of daylight between the party line and the reality on the ground.

There is also a lot of confusion over the consent model, the fundamentals of which have changed as the system moved from opt-in/assisted registration to opt out. What is implied consent, what is standing consent, and do patients have any idea of what they are consenting to?

Who knows, and quite honestly, do many care? We've heard a couple of times over the years and more than once over the last few days that what the Department of Health and NEHTA relied on in the past, and what the agency is relying on today, is the basic apathy of the average Australian consumer. We're an orderly lot, used to doing what we're told. It's doubtful this will be any different.

That said, the government has had more than six years in which to dispel some of the myths and misunderstandings about the My Health Record and they haven't done a very good job of it. Will the coming communications campaign from ADHA be any better, or will it turn into the campaign you're having when you're not having a campaign? There's an ad in that.

That brings us to our poll for the week: Do you think ADHA needs to run a national TV ad to publicise opt-out?

To vote in our weekly polls, sign up for our weekend edition or leave your comments below.

Our poll last week asked: Will ADHA's opt-out operation go without a hitch? It was probably a bit too much to ask that there be no hitches, but our readers doubt it will be smoothly sailing anyway. 23 per cent said yes, 77 per cent said no.

Comments  

# Terry Hannan 2018-05-26 08:21
It looks like Sue Dunleavy has pushed the "squirm factor" button and not before time. Is there a script of her inputs?
# Kate McDonald 2018-05-26 08:23
Here's a link to the video: https://iview.abc.net.au/programs/national-press-club-address/NC1812C007S00
# Intrahealth 2018-05-28 16:18
Great article, thanks Kate. An enjoyable read. I haven't seen silence work as an effective strategy to dispel myth and misunderstandin g before.
# Ian Mcknight 2018-05-28 17:09
Agree that it was another good article, and yes the point about silence as an effective rebuttal strategy is well made. For those of us trying to promote this over the last few years, that silence has been long and deafening at times. Surely it wouldn't have been too hard for an angency/NEHTA person to monitor the media over the last couple of years, and directly rebutt any misleading, over-generalise d or just plain untrue information. Pretty key in the battle for hearts and minds...

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