The committee recommends that record access codes should be
applied to each My Health Record as a default and that individuals should be
required to choose to the remove the code. The committee further recommends
that that the ability to override access codes in the case of an emergency
should only be available to registered healthcare providers for use in
extraordinary and urgent situations.
This recommendation is not supported as there are concerns with this
proposal. In order for all Australians to set access controls, they would need
to be provided their access code securely. Those Australians who did not (or
could not) want to receive their PIN online, would need their access code to be
sent to their postal address.
This represents a serious implementation challenge for many Australians.
The health system does not have an accurate and current address for all
Australians, which would result in a large number of Australians not being able
to receive their PIN in order to provide it to their clinician. Furthermore, it
would not be possible to guarantee that an individual's PIN would be protected
from a third party, creating a privacy and security risk for the individual.
The evidence heard by the committee during the public hearings indicated
that to realise the full benefits of the My Health Record system, an
individual's multiple healthcare providers need to have timely and comprehensive
access to their patients' medical history in which to better make a diagnoses
and provide treatments.
Asking for a PIN, and requiring consumers to remember their PIN, will
interrupt the clinical workflow and impede use of the record. Clinicians
treating people who are unable to recall their PINs will not be able to view
their patient's record. Both the clinician's and the consumer's time will be
wasted while the consumer attempts to remember or locate their PIN.
In addition much valuable clinical work is undertaken for patients when
they are not directly in the presence of their treating clinicians. For
example, a general practitioner may receive important updated information from
a specialist by letter such as a medication change or new investigation being
required. Unless the patient was present to provide their record access
control, the GP would be unable to check their MHR at that moment for important
medication interaction information, or whether or not various investigations
had already been done by another clinician. This would represent a great
barrier to the realisation of benefits from the MHR system associated with
medication safety and reducing unnecessary test duplication.
The proposal would also in practical terms effectively return the My
Health Record to an opt-in participation model. This was noted by the AMA's Dr
Chris Moy during the Senate hearings:
Basically, what happens then is the personal access code
means that the only way anybody can access it in a reasonable situation,
generally, is if the PIN is actually given to the individual, and it basically
becomes opt-in then. The person has to go in there to change those details or
actually has to be there every single time to be able to provide that
information, so it makes it much more difficult.
Information on the My Health Record website provides clear concise
information on how an individual can set a record access code and provide it to
the healthcare providers they choose.
We therefore believe the current process is appropriate.
The committee recommends that data which is likely to be identifiable
from an individual's My Health Record not be made available for secondary use
without the individual's explicit consent.
We do not support this recommendation as this would be inconsistent with
the Government's general opt-out approach to My Health Record.
The Australian Government has developed a framework to guide the
secondary use of My Health Record system data for research, policy and planning
purposes. This framework was developed in consultation with consumers,
clinicians, medical researchers and industry experts.
The aim of the Framework is to be clear and open about the potential use
The committee heard from organisations that appeared before the
committee such as the Australian Health and Hospitals Association there is also
considerable latent value to researchers in the information that will
accumulate within the My Health Record system.
This has the potential to provide unique insights into
population health issues and service utilisation patterns to the benefit of
public providers and governments. Longer term, it also has the potential to
gain longitudinal insights into how individuals' health evolves over time and
how their interactions with the health system change in response.
Coalition senators are therefore concerned that making the system 'opt-in'
for research purposes would greatly diminish the potential data pool and limit
the potential benefits highlighted above. It could also lead to distortions in
data sets and individuals who chose to opt-in under this approach may not be a
representative sample of the wider Australian public.
The committee further recommends that the Australian Government
extend the opt-out period for the My Health Record system for a further 12
Coalition Senators do not support this recommendation.
The program to create a My Health Record for all Australians by the end
of 2018, unless individuals choose not to have one, is the culmination of ten
years of planning, design and development carried out under several Health
Ministers, current and former federal governments.
The legislation and program have been scrutinised by several independent
enquiries, and shaped by national and international experience on the most
appropriate national system for Australia with regard to our federated health
system, mix of public and private healthcare, and sentiment of the Australian
The legislation to enable My Health Record to become an opt-out system
passed the Parliament unanimously in 2015 and has received bipartisan
report over this period. As recently as May this year, the Shadow Minister for
Health Catherine King indicated support for an opt-out approach.
The opt-out approach has the support of every major health peak body
including the AMA, RACGP and CHF, several of whom reaffirmed their support for
an opt-out approach in their appearance before the committee. In addition all
State and Territory Health Ministers unanimously reaffirmed their support for
an opt-out approach as recently as the August COAG Health Council Meeting.
More than 6.1 million Australians already have a My Health Record and
over 13,000 healthcare professional organisations are connected, including
general practices, hospitals, pharmacies, diagnostic imaging and pathology
The system has been in operation for over 6 years (commencing under the
previous Labor Government with support of Liberals and Nationals), with My
Health Record already improving the safety and healthcare management for
individuals and healthcare providers.
The Government has also extended the opt-out period by one month to 15
November 2018 to provide additional time to educate consumers and healthcare
providers about the benefits of having a My Health Record.
The Committee heard evidence provided by the Australian Digital Health
Agency that it has implemented comprehensive multi-channelled campaign to reach
all Australians through trusted clinical and community networks, that recognise
the complexity of the messages and allows the opportunity to answer detailed
questions. The ADHA also has plans in place to engage with vulnerable groups
and those living in remote areas.
We therefore consider that a 12 month extension recommended by the
Committee to be excessive and unnecessary.
It should also be noted the proposed legislative amendments announced by
Minister Hunt to Section 17 of the My Health Record Act would require the
System Operator (ADHA) to permanently delete health information it holds for
any consumer who has cancelled their My Health Record. This makes it clear that
the Government will not retain any health information if a person chooses to
cancel at any time. The record will be deleted forever.
This 'hard deletion' effectively means an individual's right to opt-out
remains constant, even after the after the conclusion of a formal opt-out
period. This was noted by Dr Chris Moy of the AMA when he appeared before the
The other thing is I think the importance of the ability to
hard delete the file on patient request is underestimated. I think it basically
negates the need to extend the opt-out period, because, in effect, individuals
can hop on and off the My Health Record based on their comfort level with
privacy. That will vary over time. So, basically, the AMA's position is the
amendments appear robust.
Additional Comments by Coalition Senators
The committee recommends that the Australian Government amend the
My Health Records Act 2012 to protect the privacy of children aged 14 to 17
years unless they expressly request that a parent be a nominated
This is a sensitive policy issue and we believe it is premature to
suggest specific recommendations on this matter at the present time.
There is likely to be a divergence of views within the community
balancing the rights of minors with the view and expectations of parents and
carers. It is also important to ensure such a change would not cause any
unintended consequences resulting from this change.
We also consider it is important that there is consistency in the way policy
is handled between My Health Record, Medicare and the State and Territories
Therefore, further engagement with all stakeholders is suggested before
any changes should be considered.
Senator Lucy Gichuhi
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