technology
those things don’t occur, but mostly it’s
about the safety and benefits to the patient.
Can My Health Record hold details of
advance care plans?
Yes, it can. At the moment, the advance
care plan documents are uploaded by
the individual themselves. If you have an
advance care plan that you’ve formulated
with your healthcare professional and so
on, you can upload it as a PDF. If you don’t
wish to, or you’re not able to upload the
actual advance care plan, you can just
put in the information about who is the
custodian of your advance care plan.
People have said that My Health might
be good for carers. What constitutes an
authorised representative, and when
should someone appoint one?
An authorised representative is a person
that will manage someone’s My Health
Record when they don’t have capacity to
do so. That is usually a legally appointed
representative, either through current
documentation, if you have an enduring
guardianship or potentially a power of
attorney, or as long as you can provide
documentation and prove that you are
an appropriate person to look after
someone’s My Health Record, and
that person does not have capacity to
look after it themselves.
Then the representative can manage
every aspect. They can cancel it if they
want to. They can look at what goes into
it. They can ask specialists or doctors or
certain providers to either put certain
information in or not put information in.
They can manage every aspect of it.
That would also usually apply to parents
of young children. They would be an
authorised representative until the child
turns at least 14, at which point they
can take over their own if they wish to.
Otherwise the child gets their own record
at 18, but the parent can look after it up
until that point.
Apart from the authorised representative,
there is also what they call a nominated
representative. That is more for people
who have capacity to look after their own
My Health Record but would like a bit of
assistance. They may not feel confident
looking at myGov or their own record
online, or they may not always remember
things, so they may want someone to assist
them. There are all sorts of ways they can
appoint someone.
For a nominated representative, you
can appoint anyone you wish to. It
can be family member, friend, next-
door neighbour – anyone you trust to
have access to your My Health Record.
But they don’t have as much access as an
authorised representative. For example, a
nominated representative couldn’t cancel
your record, or make significant changes,
or take other people off a record. That is, if
you had other nominated representatives,
they couldn’t say, “No, you shouldn’t have
that person. I’m going to cancel them off.”
Do you as an insider have any privacy
concerns? What is My Health doing to
protect people’s data?
There’s quite a lot that individuals can do to
protect their data. It’s very broad. It’s your
record. You can choose who sees it, who
doesn’t see it. You can do things like put an
access code on the record, which means
that no-one can see it unless you give
them the code.
The exception to that would be if you are
unconscious and in hospital, the hospital
may override that code to see your record.
But you would be notified of that, and
there are strict rules around when you can
break that code.
But generally I would make sure that no-
one would see my record unless I allowed
them to. I can hide certain documents if I
wish to. I can even ask my health provider
to just not put information on there. So if
I don’t want certain things to be available
to anyone, I ask the doctor, or I say to the
pathology lab, don’t put that up there and it
will never appear.
Personally, I see the benefits. I have
my own My Health Record. I don’t have
any access codes on it. I have it set up so
I’m notified when anyone accesses my
record for the first time. And if I had any
concerns about who accessed the record,
I would contact the help line and report it
immediately. There are very strict penalties
for anyone who might access a My Health
Record inappropriately.
As well as all that, there’s a full audit log.
So when I do log onto myGov, which is
how you look at your My Health Record,
I can see any organisation or health
professional who’s looked at it.
If you’re a carer, how easy is it to get the
record up and running?
It shouldn’t be too difficult. If a person
wishes to nominate their carer as their
nominated representative, all they need
to do is phone the My Health Record
line. Or they can go online to do it on
myGov. Equally, if somebody is going to
be an authorised representative, if the
person they’re looking after doesn’t have
any capacity to manage, they just need
to contact the Digital Health Agency and
provide the appropriate documentation.
So there is a small step of providing that
documentation, but then they’ll be set up.
That’s it. They’ll have access and can look
at it on myGov.
There are some apps that act as a
portal, so you could have it on your phone
potentially. And then every appointment
you attend, any time you need to go
anywhere with the person you’re caring
for, you will be able to access that if you
needed to. And it’s just going to save carers
so much effort and time – there’s no need
to carry around folders of information or
have long lists of things – because it’s quite
difficult to remember everything about
someone you’re caring for. And if you’re
caring for more than one person, there’s a
lot of information you need to remember
or carry with you.
Have you had any feedback, especially
from people with chronic issues and/
or carers, that the My Health Record is
making life easier?
Absolutely. There are numerous stories. If
you’re interested, you can see them at the
My Health Record website. There’s also a
YouTube channel.
There are lots of people with chronic
illness who’ve had specific kinds of
experiences. For example, there’s this
young man – I think he’s only in his 30s –
who moved to a different town and ended
up having a heart problem. He was in
hospital. He moved back home. His parents
helped him and they were able to access
all that information, rather than him trying
to remember or they didn’t know what
had happened while he was in hospital,
because they weren’t there with him.
There are numerous stories about
all those aspects, about carers, about
individuals who’ve found this to be
fantastic. There are lots of situations. If
you’re travelling, if you have many different
specialists or medications and it’s hard
to remember all the different things you
have. A friend of mine says his is fantastic.
He’s a young man, but he can’t remember
what medications he’s on. So he thinks it’s
fantastic to have his record so he can keep
a track of things.
So, yes, there’s a lot of feedback that,
generally, the people who do have these
records already have found them to be
very useful. ■
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