Transitioning from opt-in to opt-out
A key principle of the My Health Record (MHR) system is that it will
provide individuals with greater control and management of their health
information. In particular, the system is intended to enable consumers to access their own
record, control what information is in it and which health care provider
organisations can access it.
As discussed in Chapter 1, the MHR system was originally designed as a
voluntary opt-in system and, consistent with the idea of freedom of choice, individuals were free to
decide whether they wished to have an electronic health record at all. However, following a period of review and evaluation, the Australian Government
announced the decision to transition to an opt-out participation model, as part
of the 2017-18 Budget.
This chapter will consider the basis for the decision to transition to
an opt-out system and the impact this has had on individuals' ability to choose
if and how to participate in the MHR system. The chapter considers the extent
to which consumers have access to information to enable them to make an
informed choice about whether to participate in the MHR system and, if so, how
to exercise control over what records will be available in their MHR and who
will be able to access those records.
Why adopt an opt-out system?
The announcement that the system would transition to an opt-out model of
participation followed a period of review and consultation. In December 2013, a
panel of health and IT experts tabled the report of the Review of the
Personally Controlled Electronic Health Record (Royle Review). From March to October 2016, trials of different participation models were
conducted in four regions across four states.
Following completion of an evaluation of the trials and consultation
with the Council of Australian Governments Health Council, the Australian
Government decided to transition the MHR system to an opt-out model.
The need for a critical mass of
At the time of the Royle Review, the Personally Controlled Electronic
Health Records (PCEHR) system had just over one million users, and while
adoption and utilisation was slowly growing, it appeared to have plateaued
despite efforts to increase consumer registration.
Evidence to the Royle Review considered that the system would be more
valuable and more practitioners would use the system if it had a broader
participation base. A number of submitters expressed concern that an opt-in system would not generate
the critical mass necessary to make the system a success.
The Royle Review noted that without a critical mass of patients registered,
medical practitioners had no incentive to use the system. At the same time, medical practitioners expressed concern that the time
required to assist patients to register under an opt-in system was a substantial
impost on their time.
The Royle Review noted that without a clear understanding of the potential
benefits there was limited motivation for both consumers and health
practitioners to participate in the system.
Submitters to the Royle Review considered that the problems of
population and health practitioner usage could be eliminated if the system
moved to an opt-out system. The Royle Review noted that, provided safety and security issues are addressed,
the international experience suggested that an opt-out system would be well
received and that the opt-out rate could be low.
In its final report, the Royle Review recommended that the system should
be transitioned to an opt-out model. The Royle Review stated that this recommendation was subject to the completion
of minimum composite of records and the establishment of clear standards for
compliance for clinical users.
As noted in Chapter 1, the Department of Health (DOH) commissioned four
trial sites in 2016 to trial both an opt-in and an opt-out model of
participation. The report of the independent Evaluation of the Participation
Trials for the My Health Record (Evaluation) states that the trials were
public reaction to an opt-out participation arrangement for the My Health
the extent to which healthcare provider contribution and use of the My Health
Record system improves when the majority of their patients have a My Health
any implementation issues that would need to be addressed before any decision
is made about future participation arrangements.
The Evaluation found that there was consistent growth in the number of
healthcare provider organisations registering for the MHR across the trial
period, with consistently higher proportional growth in opt-out trial sites
compared to opt-in sites. The Evaluation concluded that there was evidence and support to transition the
MHR system to an opt-out model.
The concerns about an opt-in model were echoed in submissions to this
inquiry. A number of submitters stated that an opt-out model remains the only
way to achieve a sustainable number of users. For example, the Australian Medical Association (AMA) told the committee that
it considered that the move to an opt-out system was necessary to promote a
high level of participation in the system and highlighted the low rate of
participation in the system since its introduction in 2012:
The My Health Record has had a long and difficult history and
there is now considerable Australian evidence to show opt in arrangements are
very unlikely to achieve high levels of participation – amongst citizens and
clinicians. When the Personally Controlled Electronic Health Record was
launched as an opt in model in 2012, uptake remained low. As at 19 August 2018,
only 24 per cent of Australian citizens had opted in.
Allied Health Professions Australia (AHPA) told the committee that its
experiences during the participation trials indicated that the system becomes
more effective as the number of users increase:
Our own involvement with practitioners involved in the 2016
opt-out participation trials and understanding about other similar
international systems shows that the system becomes vastly more effective and
the benefits far more significant as the volume of users grows. Conversely, our
longer-term engagement with the system and its precursor show that without that
volume of consumers, the benefit to engaging with the system isn't there and practitioners
may seek in vain to make use of the system, finding that their patients don't
have records or these don't contain relevant health information.
Benefits without active engagement
The Royle Review noted that transitioning to an opt-out system would
allow 'healthy' individuals, who might not otherwise have signed up to the
system, to obtain the benefit of having an electronic health record when they
need clinical care without having to take active steps to participate. The
Royle Review noted concerns that there had been a lack of focus on those
consumers in most need of an electronic health record, such as those with
chronic medical conditions or those living in remote areas. It concluded that an opt-out system may have benefits to vulnerable and
disadvantaged groups who may otherwise face obstacles to signing up.
Federation of Ethnic Communities' Councils of Australia (FECCA) submitted
that while it believes that schemes such as the MHR should be opt-in as a
matter of principle, 'many harder-to-reach [culturally and linguistically
diverse] communities may not have opted in to the MHR.'
The Australian Digital Health Agency (ADHA) told the committee that the
ability to obtain the benefits of the system without having to actively engage
remains one of the key reasons for having an opt-out system. Mr Tim Kelsey, Chief Executive Officer of the ADHA pointed to evidence of the
success of the Northern Territory's ehealth record, to support this approach.
The Evaluation of the MHR trials found that once people received
information regarding the benefits of the MHR system, their responses to the
system were positive.
For most individuals, after automatic creation was explained
and the benefits of the My Health Record system were understood, the sentiment
was positive. They said the fact that they did not have to do anything to
create their My Health Record was a major plus. They expressed the view that
they would not have registered for a My Health Record themselves and would have
expected that their healthcare providers already would be sharing information
with other healthcare providers in this way.
The Evaluation also noted that while the opt-out approach achieved
greater relative registrations, it did so at an increased cost over the rest of
Australia. However, the Evaluation considered that this increased cost is
likely to be offset by bringing forward the benefits of the MHR system and
achieving registrations with potentially vulnerable and hard to reach groups
that may not otherwise have been engaged.
At the same time, the Evaluation noted that the proportion of Aboriginal
and Torres Strait Islander people registered with MHR was low and did not
change during the trial period. The Evaluation found that this confirmed
evidence from focus groups and trial teams that there are particular barriers
to the participation of Aboriginal and Torres Strait Islander peoples in rural
and remote areas, such as computer literacy, internet access, health literacy
and lack of linkages with other specific healthcare programs. The Evaluation noted that neither the opt-out or opt-in trials have provided
lessons on how to address the impact of no or unreliable internet access.
The committee notes the findings of the Royle Review that without a
critical mass of patients registered, there is little or no incentive for
medical practitioners to participate in an electronic health record system. Evidence
received during this inquiry also indicates that an opt-out model remains the
only way to achieve a sustainable number of users. The committee has noted the
Royle Review's observation that an opt-out system would be well received. While
the Royle Review cites consultation undertaken by the Consumer Health Forum and
international experience, as supporting a move to an opt-out system, the committee considers it is
important to note that the Royle Review did not undertake community consultation
to determine the acceptability of an opt-out system to the Australian public. The
committee also notes that the Royle Review's finding was predicated on safety
and security issues being addressed and clear standards for clinical users
The evidence to the Royle Review suggested that there had not been
sufficient focus on the needs of vulnerable or hard to reach individuals, who
may stand to benefit from an electronic health record. The committee considers
that the Evaluation identified a need for particular focus on the needs of hard
to reach individuals, such as those living in rural and remote locations,
Aboriginal and Torres Strait Islander people and people and on barriers to
participation in the MHR system, such as computer literacy, internet access
The committee recognises that an opt-out participation model has potential
to facilitate the engagement of hard to reach individuals through the automatic
creation of MHRs. However, the committee notes that while an opt-out model has
the capacity to significantly increase participation, the findings of the Royle
Review and the Evaluation identify that increased participation in the trials
was underpinned by participants receiving an explanation of the system that
addressed any concerns they had about privacy and security. The Evaluation also
noted other measures necessary to address the needs of vulnerable and hard to
Supporting individuals to actively engage with the MHR system
Both the Royle Review and the Evaluation noted the importance of
developing and implementing a comprehensive education campaign to inform
consumers and clinicians about the impact of the change to an opt-out process,
the benefits of the MHR system and the provision made to ensure the security
and privacy of records in the system.
The Evaluation noted the importance of explaining the benefits of the
MHR system in allaying individuals concerns about security and privacy.
They most often said that, while they thought that no
computer-based systems were totally safe, on balance they thought that the
benefits to them, their families and the health system far outweighed those
risks. This attitude held firm across general population, people from
culturally and linguistically diverse (CALD) backgrounds, Aboriginal and Torres
Strait Islander participants, gender, age groups, varying levels of computer
literacy and access to computers or reliable internet. This reinforces the need
for national awareness activities which make clear the benefits of the My
Health Record system as well as the privacy and security protections.
Stakeholders also advised the Evaluation of the need to develop
strategies to reach specific populations, 'such as patients who lack capacity
due to dementia or more transient states of cognitive impairment, and others
with carers acting as legal guardians (e.g. people with a disability, the
elderly, CALD populations)'. The Evaluation noted the 'motivators to use the My Health Record were most
often described as: access to information and the influence of patients' use of
the system or their own beliefs that the My Health Record system will improve
access and save them time.
The communication strategy
Submissions from ADHA and DOH and DHS advised the committee that the current
communications campaign has been informed by the trials and focuses on a
national campaign with information developed centrally, but media strategies
and advertising run at a local level.
ADHA explained that the national communications plan considered the
following key findings from the trials:
- General consumer awareness should be raised by a nationally
co-ordinated, but locally run communications campaign;
- Consumers were most receptive to messages about the My Health
Record when they were in a healthcare setting, compared with mass communication
such as letters sent to every household;
- Once aware of the My Health Record, consumers often sought more
information or an opinion about the system from their healthcare provider –
typically their GP or pharmacist; and
- It was a mistake to commence the public communications campaign
before the opt-out period had started, as some consumers wanted to opt out
immediately but were unable to, and other dismissed the message because they
were unable to act on it for another 4-6 weeks.
Responsibility for communicating the benefits of the MHR system and the
rights people have to opt out of it rests with the ADHA. The ADHA advised the
committee that it has put in place a comprehensive campaign to ensure as wide
awareness as possible, and that $27.5 million has been allocated to raise consumer awareness about
Noting the findings of the Evaluation, the communications plan for
national opt-out included:
In its submission, ADHA advised that the campaign has involved
expenditure of $5.454 million dollars and had wide circulation resulting in:
- over 925 million opportunities to see social media content;
- more than 1.5 million visits to the MHR website following
interest and publicity in the media;
- 5067 pieces of traditional media (press, radio and television); and
- availability of information in over 15 000 health care locations
including general practices, pharmacies, hospitals and Aboriginal medical
The ADHA advised that, as of 3 September 2018 and based on tracking
research surveying 1000 people weekly, awareness of the MHR system has
increased to 87 percent and awareness that every Australian will get a MHR,
unless they choose to opt out, has increased from 16 percent to 59 percent
since the commencement of the opt-out period. The ADHA further advised that
more than 1.5 million people have visited the MHR website since the
commencement of the consumer awareness campaign with the percentage of new
visitors (>81 percent) and the bounce/exit rate (>29 percent) indicating
that people have found the information they needed.
However, a number of submitters and witnesses to the inquiry raised
concerns that people are not sufficiently informed about the MHR system, its functions
and settings, to make an informed decision about whether they should participate
in the system. The Royal Australian and New Zealand College of Psychiatrists (RANZCP) called
for an expanded public information campaign and noted:
While there has been more information since the start of the
opt-out period, RANZCP members have noted that awareness levels still appear to
be low. Furthermore, there has been confusion around the intent and scope of
the My Health Record, particularly since the start of the opt-out period. It is
appreciated that assurances have been given to address some of the issues
raised during the start of the "opt out" period, however, this has
added to the confusion as some of the information provided to carers and
consumers is now out of date.
The ADHA acknowledged that there had been criticism of the
communications strategy for the MHR system. Mr Kelsey told the committee:
I fully accept the fact that there's been criticism of the
communications. Certainly there's more that can be done, and we will absolutely
be doing as much as we can.
Many submitters felt that a more comprehensive media communications
strategy should be implemented. For example, the Australian Healthcare and Hospitals Association said that the
ADHA must ensure that the benefits and relative risks of the MHR system are
understood by all segments of the Australian population to the greatest extent
possible. The Royal Australian College of General Practitioners (RACGP) recommended that
the consumer awareness campaign should better articulate what the MHR system
is, and is not, and should focus on consumer controls, including security
settings, access restrictions and default settings and the standing consent
principle underlying healthcare provider access and upload.
Raising awareness among medical
As noted above, the initial focus of the communications strategy was on
raising healthcare provider's awareness of the MHR system and the opt-out
A number of submitters recognised the important role health
practitioners could play in providing information and guidance to consumers
regarding the information held in their MHR to help them make decisions about
whether information should be uploaded, removed or protected through access
controls. The AHPA submitted that the role of health practitioners, particularly mental
health professionals and professionals providing genetic and other types of
counselling, has not been well considered and resourced. The AHPA stated that
such practitioners would benefit from targeted training and specific digital resource
packs that they could provide to their patients.
The RACGP advised that it is delivering an education and awareness
program for general practice 'to ensure they understand the impacts on their
teams and patients with the change to an opt-out model.' The committee heard that the RACGP currently has a national roadshow visiting
capital cities in all the major states and territories. Dr Pinskier told the
committee that, while it is a slow process, general practitioners who have
participated in the sessions have found them helpful.
What we're tending to find is that most of our sessions-and I
did one today by webinar–start off with an awareness level of about 20 percent.
So about 20 percent of our members will have a My Health Record, which is
relatively consistent with the population. About 20 percent have used My Health
Record to try and obtain information. But they have not really understood the
historical and environmental settings. By the end of the session, the awareness
rises substantially. Most walk out saying, 'I am so much better informed. I
should have known this two, three years ago'.
The Law Council of Australia (LCA) noted the importance of health care
professionals being involved in assisting patients to understand their MHR, but
proposed that consideration be given to providing reasonable remuneration for
their expertise and time in doing so.
Informed consent in an opt-out
A key concern for many submitters to the inquiry was that, as the MHR
system was originally designed and implemented as an opt-in system, there was a
reasonable expectation that the decision to register was underpinned by a level
of engagement and informed consent. Submitters told the committee that this
cannot be assumed in an opt-out model of participation and emphasised the need to ensure that individuals fully understand what an MHR
contains, who can access it and how and the access controls available to them. 
The RACGP told the committee that, when a MHR is established, the
healthcare consumer provides 'standing consent' for all healthcare
organisations involved in their care to access that record and upload
information. This standing consent applies until a patient explicitly
communicates withdrawal of consent. The RACGP noted that there is no legal requirement
for a healthcare provider to obtain consent from a patient on each occasion
prior to uploading clinical information nor to provide an opportunity for a
patient to review clinical information prior to upload.
In their submission the DOH and DHS explained:
The MHR system does not operate with any assumed or implied
consent. The system recognises the importance of voluntary consent so where
consent is required, express and informed consent is sought.
The President of the Australian Medical Association, New South Wales, Dr Kean-Seng
Lim, told the committee that, as one of the first users of the opt-in system,
his practice had typically spent 15 to 20 minutes with each patient, explaining
what the MHR system could do and how the consumer could control access to it.
Dr Lim expressed the view that the move from an opt-in system to an
opt-out system changes the whole framework of informed consent and increases
the responsibility to inform consumers adequately of the change.
We would argue that anyone who opted in under those
circumstances had a level of understanding. In an opt-out system that same onus
of education still exists, but the question is whether it is actually
undertaken. Our view is that there hasn't been evidence that there is good
understanding of those levels of control.
The Chair of the RACGP's Expert Committee on eHealth and Practice
Systems, Dr Nathan Pinskier, agreed that there is an increased requirement to
provide education under an opt-out MHR model. He said that increased communication
with consumer groups is needed to:
improve digital health literacy and to ensure that consumers
are better informed about what My Health Record is, what the My Health Record
expansion process is, and how they can use My Health Record to participate in their
healthcare delivery; targeted consumer education on My Health Record consumer
controls, how the record is activated, what the trigger event is and the
impacts of the current standing consent process regarding information uploaded
and viewed by healthcare providers.
DOH and DHS and the ADHA maintain that by providing Australians with
education and the opportunity to opt-out, the system ensures that Australians
who remain within the system are providing their explicit consent to do so.
The ADHA said:
While originally established as an opt-in registration model,
under an opt-out participation model, the original principles still apply:
people have the right to participate but can choose not to, and the record is
truly personally controlled.
However, other submitters were less confident that the system would
support informed consent for access to data.
Mr Paul Shetler expressed concern about the extent to which individuals
could provide clear, informed consent if they do not understand what it is they
are consenting to:
...the default needs to be that it needs my affirmative consent
to release anything. If I do give it, it's to my practitioners, my doctors, my
pharmacists—the people who are actually serving me directly. Anything beyond
that, I'm relatively suspicious of for many reasons. One is that a lot of the
time, it's very difficult to give clear, informed consent to things you don't
really understand in the first place.
Mr Grahame Grieve, Principal of Health Intersections Pty Ltd, told the
committee that the system needs to be redesigned to support a distributed
system that would enable patients to communicate directly with the healthcare
service providers. He said that people would remain suspicious of the system
for as long as it remained a single national database.
In my experience the agreements people make when they use the
system is that they want to share information with their care providers.
Different clinical contexts mean different care providers, different
requirements, but My Health Record only has one national agreement that
everything has to fit into. Something simple, 'I agree to share this with my
hospital and GP, but nobody else,' is too complex for the system because it's a
one size fits all, and people can't decide that without a personal care
The LCA argued that the need for healthcare recipients to opt out of the
secondary use of their data is at odds with the underlying principles in both
Commonwealth and state privacy laws. The LCA told the committee that these principles
provide that a health entity that holds information about a patient can only
use or disclose the information for the particular purpose for which it was
collected. The LCA recommends that healthcare recipients must provide explicit
consent if their healthcare information is to be accessed for a secondary
purpose and considered that this could be sought and obtained via the user
settings and communication channels facilitated by the MHR system.
The ADHA noted that this issue was considered as part of the transition
to the opt-out system but noted that placing barriers to participation in the
system would effectively defeat the purpose of changing the system to opt-out.
The Consumers Health Forum of Australia (CHF) told the committee that it
believed that, while it may not be possible to obtain fully informed consent
for the entire population, the option to delete records or request cancellation
of MHR registration should largely mitigate the consent issues that may be
created by having an opt-out model. However, the CHF agreed that an understanding of how data will be used, and the
benefits of this, were key to consumers providing consent.
Our research shows that Australians want ownership and
control of their own health data and want to give consent when it is used by
governments, private companies and researchers. The same research also found
that consumers are more likely to give permission if they understand how their
data will be used and the benefits that will come from its use. There is a level
of comfort among the majority of consumers in data being used to support health
providers to improve care or make better policy. But consumers are
significantly less willing to share their data if it's to be used for
AHPA submitted that greater clarity is required about how consent
operates within the MHR framework and how this might compare to the way consent
operates outside the MHR system. AHPA stated that greater clarity around the
range of patient health information that can be accessed through the courts and
other means would benefit both consumers and providers.
Awareness of privacy settings in
the MHR system
As noted in Chapter 3 and above, in addition to having the ability to
opt-out, individuals have the ability to choose to apply a number of access
controls to manage the privacy of their MHR. These access controls are set out
in the My Health Records Rule 2016 along with the default settings that apply
to every MHR.
DOH and DHS explained that these advanced settings:
...enable a consumer to set a code to limit access to their
whole MHR and to particular documents in it, and to prevent clinical
information systems from automatically checking where a consumer has a MHR.
Submitters were generally supportive of the range of access controls available
to consumers to manage access to their MHR. However, concerns were expressed regarding healthcare recipients' awareness of
the available access controls and default settings was considered particularly
important by submitters, as they viewed access controls as being a key
mechanism for managing inappropriate access to the MHR information of
vulnerable groups of people. The CHF told the committee that while it is quietly confident that there are
enough features in the privacy and protections, further improvements to privacy
and security settings need be to be made available in easy to understand
formats. CHF also recommended the development of dedicated user education about
how to deploy existing privacy and security settings.
Some submitters and witnesses to the inquiry expressed concern that the
default settings for these access controls were quite low and expressed concern
that this posed a risk for individuals who were not aware of the potential need
to adjust them.
Ms Caroline Edwards of DOH confirmed that this was intentional:
The decision is to have an opt-out system, where everyone has
a record unless they don't want one, and to provide a very comprehensive system
where people can choose to go in and set those access controls, but making sure
the default situation is one where health practitioners and patients have the
most open access to the record in order to get the health outcomes we want.
Submitters and witnesses indicated better public information or training
is needed for healthcare recipients to increase their understanding of the MHR
system's access controls. Dr Lim told the committee that it is vital to build trust in the system and
ensure that patients are aware they are able to change their access controls
'before they be downgraded to a level that may not be in alignment with their
These concerns echo submissions to the Royle Review that argued an
electronic health record 'cannot be described as personally controlled if a
population group (e.g. Aboriginal and Torres Strait Islander peoples) do not
have the skills or tools to personally control it.'
As noted earlier, based on responses to its weekly omnibus survey, the
ADHA advised that levels of awareness have increased significantly since the
commencement of the communications campaign and are tracking upwards. Mr Kelsey said
In specific terms, the target of our real effort has been on
ensuring people are fully aware of their rights to opt out and of those privacy
controls you've described. So the more mature levels of awareness have gone
from 16 per cent, before 16 July, to 59 per cent and that is tracking upwards
Mr Kelsey confirmed that this more mature level of awareness referred to
an understanding of the option to opt-out of the MHR system:
There's a level of awareness of the privacy settings. The
task that the agency was set was to ensure that people were aware of the
benefits of My Health Record, of their rights to opt out, and, as far as
possible, of the additional communications around the privacy controls.
However, Mr Kelsey advised that the ADHA does not explicitly monitor the
proportion of Australians who understand their ability or need to set access
As discussed in Chapter 3, the ADHA told the committee that at 2
September 2018, 20 957 record access codes or limited document access codes had
been set. Of this total number of access codes, 16 848 healthcare recipients
had set a record access code; 4 109 documents had been protected by a limited
document access code and 136 644 healthcare recipients had set notifications to
alert them by email or text message when someone accesses their MHR for the
At that time, the system had 6 105 536 registered users and contained
7 362 529 clinical documents. Mr Kelsey noted that this meant that approximately 0.25 percent of
healthcare recipients had elected to activate one of the privacy controls.
CHF expressed some caution in regard to these figures:
The low numbers of records with any controls set so far and
the high level of consumer engagement with privacy and security controls when
able and motivated to do so indicates that improvements to the MHR privacy and
security settings could and should occur. These low numbers could indicate that
few want to set privacy and security controls, but it is likely that, for many
people who currently have a record, they simply don't yet know that they can
exercise this level of control over their record or, if they do, don't have the
digital literacy skills to make it happen.
Barriers to participation and 'hard
to reach' individuals
A number of witnesses noted that the MHR appears to be based on the
assumption that individuals have a high level of digital literacy. Submitters expressed concern about the ability of the average consumer to opt
out of MHR or set appropriate privacy settings and noted low levels of digital
literacy among some groups of consumers.
Similar barriers to engaging with the system were raised in relation to
people with lower levels of English language proficiency or digital literacy. FECCA identified a lack of targeted communication, lower levels of English
language proficiency or digital literacy as some of the key factors inhibiting
CALD communities' involvement in an opt-in participation model. FECCA recommended
that resources and funding should be allocated to ongoing education of new
migrants who arrive after the cessation of the 2018 opt-out period, to enable
them to make informed choices in the management of their MHR.
Future Wise also expressed particular concern that individuals from
disadvantaged, or non-English speaking backgrounds are less likely to have the
privacy awareness and digital literacy to exercise an informed choice about
opting-out. Future Wise saw benefit in improving general community education on digital
literacy, not just in relation to the MHR system.
The Royal Flying Doctor Service (RFDS) also noted that both health
literacy and digital literacy levels are often low in rural and remote
communities. The RFDS submitted that the impact of this on participation in the
MHR system has not been well considered in the rollout of the system and related
public information campaigns to date. The RFDS strongly recommended a more
targeted information campaign for rural and remote populations be developed.
The Aboriginal Health Council of Western Australia (ACHWA) expressed
concern that no formal process currently exists to assist people with limited
or no access to electronic connectivity and no or limited digital literacy to
access and manage their record. The RFDS also noted the lack of technological
infrastructure in a significant number of rural and remote locations would
impact on individual's ability to access the MHR system.
Submitters also noted that it is difficult for young people and some
Aboriginal and Torres Strait Islander peoples to opt-out, because this requires
identity documents that they may not have or that may be held by others.
ACHWA recommended that consideration be given to funding the Aboriginal
Community Controlled Health Services to provide assistance to Aboriginal people
to access and manage their record. ACHWA noted that a number of practical limitations would impact on the ability
of Aboriginal and Torres Strait Islander peoples to manage the privacy settings
on their MHR:
While the client can change the privacy functions, there are
issues with Aboriginal people especially those in remote locations having
reliable digital/electronic/phone connectivity e.g. with the Helpline, waiting
times can be long, the client may not have a phone, and there may be not mobile
Submitters who represent people living with disability noted factors
that would limit the accessibility of the MHR system via MyGov and My Health
Record portals. For example, people with low vision cannot use the My Health
Record website because it is not compatible with screen readers. Similarly, concerns
were raised in on behalf of people with limited hand movement or other
The Departments advised that the 2016 opt-out trials had identified
certain individuals as 'hard to service' due to limited access to mainstream
communication channels. Adult prisoners, juvenile detainees between the ages of
14 and 17 years and Defence personnel deployed overseas were confirmed as 'hard
to service' in the 2017-18 Budget. DOH advised that it had consulted with
correctional services staff in all jurisdictions, under the auspice of the
Corrective Services Administrative Council, and with the Department of Defence
to develop a strategy to ensure that these 'hard to service' individuals are
given the opportunity to opt-out. The DOH also took advice from each state and
territory regarding internal mechanisms available to communicate with prisoners
in each jurisdiction.
In addition to this consultation, the ADHA advised that it has engaged
with over 40 national and state-based peak advocacy and other organisations representing
or supporting a wide range of 'hard to reach' and vulnerable groups. ADHA said
that a number of these groups have been funded to assist with the dissemination
of communication information directly to their members. The ADHA is also working
with organisations to tailor information for their members, including mental
However, the committee received evidence from some organisations
expressing concern that some hard to reach communities or individuals had not
received the same opportunity to access information or the required access to
enable them to opt-out of having a MHR. For example, Orygen, The National Centre of Excellence in Youth Mental Health
(Orygen) expressed concern on behalf of vulnerable young people, such as those
experiencing mental ill-health, living in out-of-home care, in secure welfare
or in detention, remand or prison. Orygen expressed concern about a lack of timely and age appropriate information
developed for young people.
An offer by Orygen to ADHA to provide assistance and advice
resulted in Orygen facilitating the provision of feedback from young people on
the information sheet after the opt-out period had opened.
The committee understands the need for the MHR system to attract a
critical mass of participants in order to maximise its utility to health
consumers and medical practitioners. However, the committee is concerned that,
without careful administration and a comprehensive program of education and
support for all participants, there appears to be a high degree of risk of
Of particular concern is the apparent assumption that by not opting out
of the MHR system, an individual has given their consent for access to
information in their MHR. The committee considers that, while this may be the
case, it is equally likely that individuals who have not opted out of the
system may have only a limited understanding of the system.
The committee considers that the focus of the communications campaign to
date has not supported people to understand the benefits of the MHR system or
the significance of reviewing the access controls on their MHR. The committee
is concerned that the default settings are lower than many people would expect.
The committee considers that the default settings should be set higher and the
system should require an individual to actively choose to remove the default
setting. Without a thorough understanding of the MHR system, individuals may
not be aware what records are available in their MHR and who can access them.
The committee is particularly concerned for the wide range of groups in
the Australian community who may experience difficulty accessing and using the
MHR system. The committee notes advice from the ADHA regarding the preparation
of information materials tailored to the needs of particular groups, but is
concerned by evidence that suggests the level of support provided to vulnerable
groups or 'hard to reach' individuals may not have been sufficiently timely or
appropriate. The committee proposes to consider the range of information and
support available to assist people who may experience difficulties accessing
the system in greater detail.
The committee notes that the ADHA is implementing a staged
communications campaign, and welcomes its recognition that there is more that
needs to be done to effectively communicate an adequate understanding of the
MHR system to all participants. The committee considers that there is a need
for greater transparency in how awareness and understanding of the system is
being tracked and measured and with regard to steps taken to address issues as
they are identified. The committee considers that there is a need for an
expanded and more comprehensive communications strategy, particularly with regard
to providing explicit guidance to enable people to review and set access
controls for their MHR. The committee considers that the opt-out period should
be extended to accommodate this.
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