AUSTRALIA’S organ donation rate was 20.8 donors per million people in 2016, up from 18.1 in 2015 when we were ranked 20th in the world. Spain is the world leader, with a 36.0 donors per million people rate in 2014.
It is clear that we still need to do better, although there have marked been improvements in the way the Australian organ donation process works.
In bygone days, if you wanted to be an organ donor, you ticked the “yes” box on your driver’s licence application or renewal and that was that. I’ve always ticked that box, but when I had to renew the licence recently, that box was nowhere to be seen.
In all Australian states, except South Australia, if you want to register as a donor, you now have to do it via the Australian Organ Donor Register. It’s an opt-in system. SA is the only state that retains the driver’s licence system. And SA, just quietly, has the highest donors per million people (24.7) of any Australian state. Queensland, at 15.1 donors per million people, has the lowest.
Spain has an opt-out system.
This week, I decided to register as an organ donor. I succeeded, but I aged visibly in the process.
There are four ways of doing this.
Download a form here, print it out, fill it in, pop it in an envelope, take the dog for a walk to your nearest post-box or Australia Post office and snail mail it. A pleasant way to spend an afternoon.
Potentially dangerous territory, as it involves an Australian Department of Human Services website. They can be tricky things, requiring an active obfuscation detector and a PhD in weasel words. Perhaps they have an inbuilt “journalistometer”, which detects visitors from the Fourth Estate and promptly sends them off on a wild goose chase for a fact. I have never found them easy.
Until today! This particular webpage is a cracker. I registered as an organ donor in under 5 minutes. Seriously.
Express Plus Medicare smartphone app
In theory, this should be easy. Download the app, enter your details, follow the signs, register.
The only trouble is, according to another Department of Human Services website, the first step in registering via the app is to “create a myGov account and link to Medicare”.
Oh dear. This brings me to the fourth option …
Register using your existing myGov account
This, of course, presupposes that you have already been through the hell of creating a myGov account.
I had to go through this torture in the middle of last year when I needed to renew my Medicare card. I tried until I was blue in the face. For days I tried. I invented new curse words in the effort.
In the end, I had to trundle down to my nearest Centrelink, where all good Medicare facilities now reside. I filled out a form, waited in a queue, was interviewed by a very pleasant, but very world-weary chap who was extremely patient and helpful.
I got a new Medicare card. I didn’t get a myGov account.
It took until December for me to regain the mental strength to once again tackle Mount myGov. I trained hard and I was well hydrated going in.
After an hour, it was done. Not only did I have a myGov account, but I had successfully linked my Medicare account to it, and my myHealth record. Success! Flag planted.
For the purposes of this article, this morning I signed back in, just to see what was what.
By the way, you can’t just sign in to myGov. Even if you remember your password, you then have to wait for the site to send a six-digit code to your mobile phone, and then you enter it before you’re allowed in.
Once there, though … oh, the riches to behold. There was my myHealth record. I’ll have a look at that, I thought, clicking the button.
Sadly, doing that actually takes you out of myGov and into myHealth. Where I found nothing. My name and address and emergency contact. No records. No blood tests, no imaging. Apparently, when you create a myHealth account, nobody tells your doctor, unless you remember to do it next time you’re in your GP’s surgery, streaming from every orifice. “Add this yourself”, “ask your doctor to add this”, myHealth says.
It’s the world’s most onerous opt-in system.
According to the government’s own statistics, as of 26 March 2017, over 4.6 million people have a myHealth record. That’s 19% of the Australian population. Thirty-six percent of registrations come from people aged 20 years or under. Another 50% come from the 20–64-year-olds, and just 13% from the group who probably need it the most, the ones who are 65 years and over.
I’d love to know how many of those registered records have actual, useful information in them. After all, I’m one of the 4.6 million and there’s nothing in mine. I bet I’m not the only one.
Anyway, back to my wanderings through the joy that is myGov.
Once I’d finished gaping, crestfallen, at my useless myHealth record, I decided to head back to the myGov homepage to see if my organ donation registration status had updated yet.
Click. Your session has timed out. Please sign back in to continue. Click. Remember password. Click. A six-digit code has been sent to your mobile phone. Bang head on desk. Ping. Enter code. Click. And there I was back at my myGov homepage.
There it told me that I could register as an organ donor by clicking on my linked Medicare account. Click. Check your details. Click. Ah-hah. Finally, I strike gold. Register to be an organ donor. Click. You can put in your driver’s licence number to check if you’re already registered. Or you can either click the button called “register me” or you can click the one that says “I wish to opt out of receiving an invitation to register for the Donor Register”. Click on the first and you finally get to fill in the right form.
Now, I’m not a doctor. I am a patient. It’s also true that part of my job here at the MJA and MJA InSight is in UX. That’s “user experience”. I spend large parts of my life mapping ways to make the experience of the users of our websites better.
myGov is a UX nightmare. myHealth is a UX nightmare.
If we are serious about improving Australia’s organ donation rate, then encouraging people to register via the myGov pathway is not the way to do it. The minimum number of clicks and the least amount of bureaucratic complexity are the key.
As long as we insist on an opt-in system, we won’t get the results we want. We should take a tip from our Spanish friends and make it more difficult to say no than yes.
In the meantime, take my advice, use option 2. Go to https://www2.medicareaustralia.gov.au/pext/registerAodr/Pages/DonorRegistration.jsp and spend 5 minutes registering to be an organ donor.
Then tell your family that you’ve registered, and while you’re at it, give them the link.
Cate Swannell is a medical journalist and the editor of MJA InSight.
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