Report to the Commonwealth
Department of Health on the
public consultation into the
implementation of the
recommendations of the
Review of the Personally
Controlled Electronic Health
Record
September 2014
Contents
Executive summary........................................................................................................ 1
Background .................................................................................................................... 4
Key themes arising from consultations .......................................................................... 8
Executive summary
In May 2014 the Federal Minister for Health released the report of the Panel established to review the
implementation of the Personally Controlled Electronic Health Record (PCEHR). The Department of Health
engaged Deloitte Australia to facilitate discussions of the findings of the review, focussing on implementation.
Consultations were held between July and September, involving over 500 consumers, health care providers
(including GPs, specialists, allied health practitioners, and nurses) working in primary and acute care settings,
pharmacists, health software vendors, private health insurance providers, medical indemnity insurance providers,
private hospital representatives, and providers and community workers working with indigenous and remote
communities. In addition a work shop involving over 100 attendees of HIC 2014 (a conference organised by the
Health Informatics Society of Australia) was conducted. An on-line survey was made available via the
Department of Health website, and 609 individuals participated (across three categories – consumer, health care
practitioner, software vendor).
The overwhelming conclusion from the consultations is that a significant majority of those consulted support the
concept of the PCEHR and want to see it progressed so that content is expanded and its use much more
widespread. The recommendations of the Review Panel are seen as a good way of progressing this.
Critical and consistent issues addressing implementation going forward came from all stakeholders. At an high
level these include:

Articulating a clear end game and a roadmap to reach that point – most of those consulted understood
the developmental nature of the program and recognised the scale of the undertaking would take time,
even when they were not personally aware of the PCEHR. There is a practical recognition that the
PCEHR will continue to improve over time provided there is a clear and publically available PCEHR
roadmap of how the PCEHR will continue to be developed and improved. This is also a critical
requirement for software vendors serving the health sector – certainty of implementation and
knowledge of where and how they should target their development efforts to support roll-out will be
important.

Communication that is targeted and delivered consistently across time is needed to rebuild momentum
and engagement. Using an approach that targets high level messaging and more localised support for
change management will drive greater adoption by clinicians and consumers. Communication is
needed to address both the relatively low level of awareness of the detail of the PCEHR amongst
consumers and the potentially negative views amongst clinicians. A single, high level approach will not
work for all stakeholder groups. The low level of consumer awareness does not mean that consumers
do not appreciate the potential benefits. The consultations showed that consumers are able to rapidly
absorb and understand the benefits, and see the impact of benefits across the community even if they
may see no immediate benefit for themselves. Involvement of clinicians and consumers in the design
and roll out of communication with all stakeholders was strongly supported.

Consumers overwhelmingly support the concept of an opt-out model for participation and personalised
controls, even whilst recognising they may not be significant users. Their greatest concerns are that
healthcare providers may elect to opt out. Issues of information security and misuse still exist but are
not predominant concerns. Clinicians recognise that the proposed changes will remove some of the
barriers to their use of the system, but not all. Opt-out must be accompanied by improved content (and
contribution from a broader group of clinicians) and attention to the work load/cost implications that may
fall on the shoulders of healthcare providers as the changes are rolled out.
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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
For clinicians, near universal usage envisaged with the move to an opt-out model of participation by
individuals removed a part of their concerns. But attention to building clinical utility of the current
PCEHR system, building a wider clinician contribution base so all clinicians would benefit from
information shared, and attention to their change management concerns are equally critical. Funding of
change management and ongoing incentives for clinicians remain critical implementation issues.

Usability improvements for clinicians ranged from the actual interface (ease of log-in, patient
identification, help desk support) and integration into existing workflows (and patient management
systems and tools), to clarification of issues of consent in the use of information in an opt-out
environment, clarification of medico-legal issues and reliance on the record as part of the clinical
process, and additional content (for example accurate and up-to-date alerts and current medications,
diagnostic imaging, medications management, patient directives, improved demographic information).
Easily accessible ongoing training and an understanding of the different clinical environments will also
support clinician acceptance.

The majority of consumers and some providers also strongly believe that provider participation should
be made mandatory or at the very least also move to an opt-out model of participation to drive provider
participation and contribution of information to the PCEHR.

There is not clear consensus of how the model should be commenced – options canvassed ranged
from all Australians having a shell-record from a single point in time that is ‘activated’ when they
present to a clinician for the first time after that date, to phased roll-out for frequent users (such as older
Australians or those suffering from a chronic disease) or on a geographic basis. Simplicity and clarity
will be key – what does it mean for me, when will it happen, what do I have to do, and how do I get
more information if I need it?

While consumers are happy to know that personal security and access controls exist for the PCEHR
and the content within their record, the majority of consumers consulted indicated they are unlikely to
use the controls to block access to their record, or to particular documents in their record, except in
very special circumstances.

There is strong support for improving the governance arrangements for the PCEHR through the
recommendations provided in the PCEHR Review. Improvements to governance arrangements should
include a stronger skills-base for decision making roles and an effective mechanism for achieving broad
stakeholder engagement aimed at involving the “average” clinician rather than (or as well as) the early
adopters and very skilled or “super-users” to provide input into the governance process.

For vendors, the critical implementation issues relate to a known timeframe for software development
and redevelopment, a consultative approach to development of specifications and standards, use of
international standards wherever relevant, and sufficient lead time and resources to implement the
standards and specifications (or change) into their software ahead of the specification/standard
becoming a requirement.
Considerable good will exists to improve and hasten the achievement of an ubiquitous PCEHR used by clinicians
and consumers in joint management of health – this can be harnessed though better identification of benefits, a
clear path to implementation and extensive and ongoing consultation with and involvement of clinicians and
consumers in the design of a redeveloped PCEHR going forward.
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Report on consultation
findings
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Background
Background
Australia’s national shared electronic health record system (currently known as the PCEHR) provides Australia
with a core, secure infrastructure platform to facilitate sharing of patient information across care settings. The
PCEHR is still in a relatively early stage of development but is a key eHealth foundation.
The PCEHR provides a platform for the secure sharing of key health information across the continuum of care. It
provides a foundational platform to facilitate improved medications management and improved care coordination,
particularly for those with frequent contact with the health system – mothers and babies, older Australians,
indigenous Australians and Australians living with chronic disease. In addition, with the implementation of a
national electronic health record, Australia has become one of the few countries in the world to achieve a
nationally interoperable eHealth capability of this scale.
But the benefits of the PCEHR will only be realised if it is ubiquitous in its reach and participation, useful in its
content and capabilities and trusted in its security and protection of privacy. While only one element of a much
larger national eHealth agenda – with much of the activity occurring in local primary and acute care settings - the
PCEHR has attracted a disproportionate amount of attention and discussion to date. Much of this attention has
been focused on the quality, usefulness and ease of access to information in the PCEHR and the fact that this
system is not yet at a point of maturity where it offers quick meaningful additional value to clinicians.
With this situation in mind, the Government commissioned a review in November 2013 to assess the status of the
PCEHR implementation and examine issues with take-up. The outcome of this review is a set of 38
recommendations in relation to the PCEHR and its broader operating and governing environment designed to
improve the utility of the PCEHR, the effectiveness of its operation and to encourage the adoption and meaningful
use of the system by providers and consumers.
Project context
Following completion of the PCEHR Review, the Government wished to undertake a consultation program to
engage stakeholders in relation to the implementation of the review’s recommendations. In particular these
consultations canvassed the views of stakeholders in relation to:

The adoption of an opt-out, rather than opt-in, model for consumer participation in the PCEHR –
including information and education needs; security, privacy and usability issues and expectations;

Records that should be included in the system; and

Record information and access control and notification of access to the system.
In essence, these three areas are focused on driving adoption of the PCEHR to make it ubiquitous, enhancing
the content of the record to make it useful and ensuring that the access controls and notifications are appropriate
to make it trusted.
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Objectives of stakeholder consultation
The key outcome of the consultation was to understand the views of consumers, clinicians and other key
stakeholders to inform the system design, implementation and communications planning, and risk management
planning for the implementation of the PCEHR Review recommendations. Effective and focused stakeholder
engagement is critical to ensure that key issues are heard and understood, and key ideas are incorporated.
While the PCEHR Review Panel engaged with key stakeholders and received a number of submissions, its scope
and timeframes did not allow for a broad ranging consultation targeted at the key groups who are critical to the
success of the PCEHR - providers, consumers and vendors. The objective of this consultation program was to
engage with these broader stakeholders to hear their views, understand their concerns and understand issues
with the implementation of the Review recommendations..
Approach to consultation
Consultations were conducted using face-to-face workshops with large and small groups. This was supplemented
with a small number of group teleconferences with important stakeholder groups who were not easily able to
attend the workshop sessions. Workshops targeted specific stakeholder groups including:

Consumers

Care providers (including GPs, specialists, allied health practitioners, and nurses) working in primary and
acute care settings

Pharmacists

Health software vendors

Private Health Insurance providers

Medical Indemnity Insurance providers

Private hospital representatives

Providers and community workers working with indigenous and remote communities

HIC 2014 Workshop. (HIC is an annual conference organised by the Health Informatics Society of
Australia – over 100 attendees of the conference elected to participate in a consultation workshop.)

An on-line survey, accessed via the Department of Health website.
The following table summarises the consultation workshops conducted over the period of the engagement:
TABLE 1: SUMMARY OF CONSULTATION WORKSHOPS
Location
Number of Workshops
Groups Consulted
Canberra
3
 Consumers
 Pharmacists
 Providers
Sydney
6
 Consumers
 Pharmacists
 Providers (x2)
 Software vendors
 Medical Indemnity Insurers
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Location
Perth
Number of Workshops
Groups Consulted
3
 Consumers
 Pharmacists
 Providers
Brisbane
4
 Consumers
 Pharmacists
 Providers
 Software vendors
Hobart
3
 Consumers
 Pharmacists
 Providers
Adelaide
4
 Consumers
 Pharmacists
 Providers (x2)
Melbourne
8
 Consumers
 Pharmacists
 Providers
 Software vendors
 Private Health Insurers (x2)
 Private Hospitals
 HIC Conference attendees
Alice Springs
3
 Consumers
 Indigenous health care providers
 Providers
Teleconferences
3
 Remote and Indigenous Consumer representatives
 Central Queensland Medicare Local eHealth Committee
 Australian College of Remote and Rural Medicine
Total
37
Each of the consultation sessions was structured as a guided discussion using a set of questions based on the
key focus areas of the consultation as described above. The questions in each session were tailored to draw out
the likely areas of concern and potential impacts of the recommendations on the stakeholders in each section.
The following table summarises the consultation questions used for each group of stakeholders:
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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TABLE 2: SUMMARY OF CONSULTATION QUESTIONS
Stakeholders
 Consumers
Consultation focus areas
 Consumer impacts of moving to an opt-out model
 Consumer views of privacy, security and access controls of personal
information in the PCEHR
 Consumer views on notifications associated with PCEHR record access
 Pharmacists
 Impacts of moving to an opt-out model
 Providers
 Views of governance of the PCEHR
 Private Health Insurers
 Views on PCEHR record content and PCEHR utility
 Views on training and support required to get clinician engagement
 Software vendors
 Vendor impacts of moving to an opt-out model
 Vendor views on changes to PCEHR record content and PCEHR utility
 Vendor views on the introduction of new functionality to the PCEHR
 Vendor views of governance of the PCEHR
 Vendor views on supporting and a standards and compliance driven
approach to further development of the PCEH
 Medical indemnity
insurance providers
 Insurer views on the impacts and implications of moving to an opt-out
model
 Insurer views on the impacts and implications of incorporating pathology
results into the PCEHR
 Insurer views on the impacts and implications of incorporating
diagnostic imaging reports into the PCEHR
 HIC Attendees
 Impacts of moving to an opt-out model
 Privacy and security of personal information in the PCEHR
 Views around training and education support for healthcare
providers/professionals and consumers
 Views on record content in the PCEHR
 Support for new functionality in the PCEHR
 Issues around compliance with eHealth specifications and standards
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Key themes arising from
consultations
Introduction
The consultation workshops conducted with stakeholders used the key themes discussed in the Background
section to guide and prompt conversation. Throughout the consultation sessions discussions with stakeholders
tended to start from these initial themes and then diverge and re-converge around a fairly consistent set of
common themes. This set of common themes was raised in almost every consultation session and have been
used in the following sections as the basis for structuring the key findings that came out of the consultation
process.
The overwhelming conclusion from the consultations is that a significant majority of clinicians and consumers
support the concept of the PCEHR and want to see it progressed so that content is fuller and its use widespread.
Concerns with current content and utility would be alleviated if there were a clear end game and a roadmap to
reach that point – as most people consulted understood the developmental nature of the program and recognised
the scale of the undertaking would take time, even when they were not personally aware of the PCEHR. Much
greater attention to targeted and regular communication with different categories of clinicians and consumers
about benefits, use and planned improvements, as well as more localised support for change management will
drive greater adoption by clinicians.
Consumers overwhelmingly support the concept of opt-out and personalised controls, even whilst recognising
they may not be significant users. Their greatest concerns are that healthcare providers may elect to opt out.
Issues of information security and misuse still exist but are not predominant concerns. Clinicians recognise that
the proposed changes will remove some of the barriers to their use of the system, but not all. Opt-out must be
accompanied by improved content (and contribution from a broader group of clinicians) and attention to the work
load/cost implications that may fall on the shoulders of healthcare providers as the changes are rolled out.
The public consultations were also supplemented by an on-line survey, available on the Department of Health
website. The survey was structured around questions similar to the themes used for the facilitated consultations.
1,435 individuals commenced the survey and 815 individuals completed it. Of the 815 completed surveys, 609
involved sufficient responses to questions to be able to be included in the analysis. Of the 609 that completed
surveys 317 were healthcare professionals, 217 were consumers and 21 were medical software vendors. Survey
respondents displayed broadly similar interests and concerns to the results of the consultation sessions.
General awareness and understanding of the PCEHR
Knowledge and understanding of the PCEHR was not strong – at best some consumers had ‘heard of it’
but did not really know what “it” is. Clinicians were more aware but few were active users, and many had
preconceived views based on what they had “heard” about it (generally negative). Many stakeholders felt
that there is a significant lack of understanding of the purpose and value of the PCEHR to consumers and
providers which has been fuelled by poor awareness raising, lack of information and misinformation. This
has led to a lack of registration for the PCEHR and a lack of use of the PCEHR as many consumers and
providers are unaware of its existence, unaware of its purpose and potential benefit or have been given a
negative perception of the PCEHR through hearsay and anecdotal comment without having actually tried
to use it. However, consumer discussions indicated that it was not hard to explain to consumers the
intended benefits and underlying concepts behind the PCEHR. For clinicians a more positive awareness
will need to be accompanied by content and functionality improvement and addressing their fears of
increased workload associated with its early stage roll out.
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implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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Many consumers consulted were unaware of the existence of the PCEHR or did not have a clear understanding
of its purpose and potential benefits before the consultation. Consumers felt that there had been no consistent,
widespread awareness raising and education of consumers in relation to the PCEHR. What communications
there have been were patchy and inconsistent. Most consumers felt that they would have been more likely to
register for the PCEHR had they been aware of its existence and had a better understanding of the purpose and
benefits of having a record.
Providers were similarly concerned about the lack of awareness raising and education that has been conducted to
date in relation to the PCEHR. While more providers than consumers were aware of the PCEHR, most felt that
there had not been enough done to promote the concept, purpose and benefits of the PCEHR to providers
outside of the PCEHR Lead Sites. Providers raised concerns that the challenges of obtaining National
Authentication Service for Health (NASH) certificates and registering for the PCEHR were leading to poor
perceptions of the record itself and this was being fuelled by misinformation.
Many stakeholders raised concerns about how those who come from culturally and linguistically diverse
backgrounds, persons with a disability, or people with limited or no access to the internet, will be made aware of
the PCEHR and will be encouraged to participate. Particular groups mentioned included: the aged and frail,
migrants and refugees, individuals with cognitive impairment and those in lower socio-economic groups.
Individuals in these groups may not be frequent users of electronic communications and may not easily be able to
access online information or services; hence consideration needs to be given to how these groups will be
communicated to and engaged and how their participation in the PCEHR will be supported.
All stakeholder consultation sessions provided feedback on the need for a clear communications strategy aimed
at raising awareness of the PCEHR, its purpose and its benefits, and focused on both consumers and providers.
There was a strong view that this communications strategy should form part of a careful approach to
implementation aimed at driving adoption and use of the PCEHR. There was also a strong view that
communications should commence well ahead of any planned initiatives to drive PCEHR adoption and should
utilise a range of media and mechanisms for communicating with and providing information to consumers and
providers. It was clear that the communications approach should be crafted around different audiences (both
across and within clinicians and consumers), be persistent over time, be obvious about actions that needed to be
taken and give people the opportunity to explore different sources of information to improve their own awareness.
Communications will need to be tailored to different stakeholder groups (consumers, different provider groups,
vendors etc.) and will need to clearly highlight the intended benefits for each group. Messaging will also need to
be carefully tailored to acknowledge the potential for different groups (e.g. allied health, specialists) to participate
in the PCEHR and future plans for enabling and improving access. Communications will also need to clearly set
expectations around the role and obligations for different stakeholders in interacting with the PCEHR.
There was a particularly strong view put forward that we cannot rely on “pull” based communication mechanisms
such as publishing information on the Internet, providing leaflets in provider suites or having an information line
available for people to call. While these mechanisms may be useful to support further education of consumers
and providers, there is not currently sufficient awareness of the PCEHR to drive individuals to seek out
information. Instead there is a need for early mechanisms to be based on pushing information through a range of
media such as radio, TV, print supported by advocacy through trusted sources such as providers, and provider
peak organisations (AMA, Pharmacy Guild etc.). This awareness raising and education should commence ahead
of any communications in relation to proposed changes to the PCEHR such as a move to an opt-out model so
that individuals have a positive and more informed context within which to consider proposed changes.
While there was a consistent view that information and awareness raising needs to be seen to come from trusted
advocates there was significant variance in whom individuals would trust to provide information. There were quite
conflicting views on the role of Governments, providers, health support and peak groups (NPS, AMA, Pharmacy
Guild, disease specific support groups etc.). This highlights a need for advocacy around a consistent set of
messages from a broad range of organisations rather than a single organisation.
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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The move to an Opt-Out model
The vast majority of stakeholders consulted support a move to an opt-out model to drive consumer
participation in the PCEHR and to achieve a critical mass of participants in the record. For most
consumers opt-out seemed to be a “no brainer” and for clinicians near universal usage removed a part of
their concerns. The majority of consumers and some providers also strongly believe that provider
participation should be made mandatory or at the very least also be made opt-out to drive provider
participation and contribution of information to the PCEHR. Also important for clinicians is to clearly
address the issue of consent within an opt-out framework.
The majority of consumers consulted supported a move to an opt-out model once they were made aware of the
PCEHR, its purpose and benefits. Most consumers felt that the current low consumer registration numbers were a
result of lack of awareness of the PCEHR, difficulties in registering associated with the current registration
processes or apathy on the part of consumers rather than an objection to having a PCEHR. Most consumers felt
that a move to an opt-out model would address these issues by removing the need for consumers to explicitly
register for a PCEHR. At the same time, consumers felt that it would be important to retain the ability to opt-out of
the record for those who have an explicit objection to having a PCEHR. Therefore an opt-out rather than a
mandatory participation model was seen as preferable.
A similar view was held by the majority of providers consulted who felt that a move to an opt-out model would
rapidly create a critical mass of consumers in the PCEHR. Many providers indicated that they would be more
willing to participate in the PCEHR if they knew that there was a high likelihood that their patients will have a
record. Providers were concerned however about the impacts on their practice if they become the primary source
of education to consumers around opt-out or are expected to be the primary channel through which consumers
will seek to opt-out (i.e. if opt-out is going to be managed via an assisted opt-out process similar to the assisted
registration process that many providers support today).
Both providers and consumers raised concerns about how an opt-out process will work for those who will struggle
to understand the PCEHR and the implications of an opt-out process, in particular those who come from culturally
and linguistically diverse backgrounds, persons with a disability, or people with limited or no access to the
internet. Consideration will need to be given to how these groups are communicated with so that they understand
the implications of an opt-out model and are provided with appropriate mechanisms that will allow them to further
educate themselves, seek assistance if required and be able to opt-out if they decide to do so. At the same time,
many stakeholders consulted felt that an opt-out process would be more effective in getting consumers in these
cohorts to enrol as many of these consumers would benefit from a record but are not easily able to opt-in.
Many consumers consulted could see the benefit of having a record at different stages of their lives, even if they
felt it was not applicable to them at the current point in time. Consumers found it easy to identify periods where
they would be likely to have a high level of interaction with the health system and would hence benefit from having
a PCEHR such as early childhood, starting a family, contracting a chronic/complex condition and ageing.
Consumers could also see the benefit of the PCEHR to friends and family that they know are in these periods of
high interaction such as consumers with ageing parents/grandparents.
Consumers and some providers were concerned about the ability for providers not to participate in the PCEHR,
particularly when consumers will be required to opt-out. There is strong concern that the PCEHR is only useful if
all providers are contributing information to a consumer’s record. Consumers were particularly concerned about
scenarios where they want their information to be sent to the PCEHR but the provider is unable and unwilling to
participate. A number of providers echoed similar concerns that a consumer’s record will not be complete if other
providers are not able to or not willing to put content into the record. Some providers also felt that there was a
good clinical practice obligation on providers to contribute information to the record.
The view was put forward in every consumer consultation session that providers, at a minimum, should also move
to the same opt-out model of participation to drive provider participation. Many consumers felt that providers
should not have an option to opt-out but instead, participation in the PCEHR should be a requirement for all
providers. There was also a strong view put forward that consumers should be able to easily identify which
Commonwealth Department of Health: Report to the Commonwealth Department of Health on the public consultation into the
implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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providers do/don’t participate in the PCEHR so that consumers can find a provider that participates in the PCEHR
if their usual provider decides to opt-out.
The design of an Opt-Out model will be very important
While the vast majority of stakeholders consulted support a move to an opt-out model there is significant
interest in how the model will be communicated and how it will be introduced. Stakeholders strongly
recommended that introduction of an opt-out model needs to be carefully and collaboratively designed
with input from consumer and provider stakeholders to ensure that it is understood and seen as a
positive move.
The importance of consistent and extended communication across a range of media and to different
audiences could not be emphasised enough. The benefits of participation must be persuasively
articulated and the actions to be taken by consumers and clinicians alike must be clear and nonthreatening. Opting-out should not be a complicated hurdle – and the opportunity to opt back in should
be equally simple. There is not clear consensus of how the model should be commenced – options
canvassed ranged from all Australians having a shell-record from a single point in time that is ‘activated’
when they present to a clinician for the first time after that date, to phased roll-out for frequent users
(such as older Australians or those suffering from a chronic disease) or on a geographic basis.
Simplicity and clarity will be key – what does it mean for me, when will it happen, what do I have to do,
and how do I get more information if I need it?
While there was strong support expressed for the introduction of an opt-out model, many stakeholders expressed
concern that the model could be perceived in a negative light, particularly in the current environment of poor
understanding if the design of the model and approach to implementation is not carefully thought through and
clearly communicated. Some stakeholders were concerned that this could be seen as a move to force people into
a system that would give governments and others access to confidential health information which could then be
used for unrelated purposes.
Stakeholders also expressed the concern that the introduction of an opt-out model could be rushed through
without giving consumers, providers, or vendors sufficient time to understand the system and to prepare for
implementation. The concern is that a rushed introduction will result in a poor initial experience particularly for
consumers and providers as they seek to start using a system in a health care sector which is not quite ready.
To address this, stakeholders advocated the need for a careful and collaborative approach to the design and
implementation planning for an opt-out model that includes a sufficiently broad range of stakeholders. Some of
the key factors that need to be considered in the design include:

Significant work needs to be done to raise the awareness of the PCEHR amongst both consumers and
providers ahead of the introduction of an opt-out model. The better educated and aware that consumers
and providers are, the more likely they are to accept the introduction of an opt-out model;

An opt-out model should be publically announced and significant awareness raising of the move to an
opt-out model should occur well ahead of the planned date for introduction;

Consideration should be given to providing an “embargo period” ahead of an opt-out introduction date
during which those who wish to opt-out can register their preference so that their record does not get
created at all;

Consideration needs to be given to what default access control settings will be applied to all records
created through the introduction of an opt-out model. Some consumers stated a preference to have their
record initially created with restrictive access settings while others preferred to have no restrictions
applied to their record when first created. Stakeholder consultation as part of the design process will be
required to determine an agreed default setting for record access settings;
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implementation of the recommendations of the Review of the Personally Controlled Electronic Health Record
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
An agreed consent regime associated with access controls needs to be agreed and communicated.
There is misunderstanding about current consent requirements and this cannot be carried forward into
an opt-out model;

Consumers stated a preference to be able to opt-out and opt-in by choice during different phases of their
life coinciding with higher and lower periods of interaction with the health system (i.e. once you have
opted-out you should still be able to opt-back-in at a later stage); and

Consideration will need to be given to what happens to the content in a consumer’s PCEHR when they
opt-out. Consumers proposed a range of models for how content might be dealt with at the point of
opting-out including:

Deleting all content from the record once a consumer has opted-out;

“Suspending” a consumers record when they opt-out but retaining the content of the record so it
can be reinstated if they opt-back-in. While “suspended” the record cannot be accessed by
anyone and no new content can be added to the record; and

“Hiding” a consumer’s record when they opt-out but retaining the content of the record and
allowing new content to continue to be added to the record. While the record is hidden the
record cannot be viewed by anyone but new content will continue to be uploaded invisibly by
providers that the consumer interacts with.
The PCEHR benefits arise from a “virtuous circle” of contribution by clinicians
so just moving to an Opt-Out model of itself won’t deliver meaningful use
Providers were concerned that moving to an opt-out model won’t by itself deliver meaningful use of the
record by providers or consumers. Meaningful use will only come through the utility of the record and
everybody in the continuum of care contributing in a virtuous circle to the record.
Concerns were regularly expressed amongst providers, that moving to an opt-out model will result in the majority
of consumers having a record but will not in itself drive meaningful use by providers or consumers. Meaningful
use will only be driven by the record delivering value to providers and consumers. Providers will receive value
from the record if it contains useful content that assists in the delivery of care and when the record is easy to
access and use.
GPs, in particular, feel that they are the primary contributors to the record to date and that they derive limited
benefit from this contribution. Other clinician groups (in particular allied health) have limited capacity to contribute
but would like to do so.
Consumers and providers both highlighted that the PCEHR operates on a virtuous circle where value is only
delivered if everyone involved in the continuum of care for a patient contributes to their record. An individual
provider does not receive value from the content that they put into the PCEHR about a patient as this information
already exists in their own clinical information system. A provider receives value from the content that other
members of the care team put into the record. Therefore, for everyone to receive value, everyone must contribute.
To achieve the virtuous circle, stakeholders identified a number of barriers that must be overcome:

The administrative and usability barriers to participation that exist today must be overcome. This includes
the complex processes that exist today to apply for PCEHR registration, NASH certificates, determining
and managing HPI-Is and HPI-Os as well as improving the user interfaces of the PCEHR that have been
implemented in GP practice software;

Identifying means by which provider groups who have limited or no access to software solutions that are
PCEHR enabled such as specialists and allied health providers can be provided with access to the
PCEHR; and
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
Working with private hospitals and private specialists to agree processes, responsibilities and obligations
for the creation and uploading of content for patients treated by private providers and in particular
Visiting Medical Officers (VMOs).
Control of and access to personal information in the PCEHR
While consumers are happy to know that personal security and access controls exist for the PCEHR and
the content within their record, the majority of consumers consulted are unlikely to use the controls to
block access to their record or to particular documents in their record except in very special
circumstances. Providers were concerned about whether the move to an opt-out model of participation
for individuals would remove the implied consent that exists today and would result in them having to
ask for explicit consent to upload content during each instance of treatment.
There was a strong view from consumers that the access controls for the PCEHR were an important feature for
individuals concerned about privacy and confidentiality of their health information, helping them to feel more
comfortable with the concept of the PCEHR. Many consumers however felt they were unlikely to use the access
controls to limit access to their record in a significant way as they felt that this would impact the value that their
record would deliver. However, they recognised the right of others to choose a different approach.
A small proportion of consumers did believe that they would make active use of the access controls and wanted
to be able to have quite granular control over who could access their record and when they could access it.
Granular access controls proposed by consumers (some of which already exist) included:

Being able to give providers access to their record for a specific period of time only (e.g. 24 hours);

Having a means to only make the record accessible to a provider while the patient is present (e.g. the
record can only be accessed by the clinician when the consumer enters a “PIN” into the providers
computer);

Having the record configured so that any provider can upload content to the consumer’s record but
providers can only view the record once given specific permission by the consumer; and

Having the ability to control record access setting by provider “type” – e.g. all types of providers are able
to access demographic, allergies and alerts information but other providers, e.g. allied health providers,
are not able to access certain document types without specific permission.
Providers and Medical Indemnity Insurance Providers were quite worried about how the implied consent model
that exists under the current opt-in model would be impacted by a move to an opt-out model. These stakeholders
were concerned that moving to an opt-out model would remove the implied consent that is established by the
consumer explicitly registering for a PCEHR and would result in a situation where the provider was required to
seek consent of the consumer every time they wanted to access the consumer’s PCEHR to view their record or
upload content. This was seen as an unworkable model which would create a significant impost on provider’s time
and could make a provider liable for an inadvertent security breach if they forgot to ask permission before
accessing a consumer’s record.
Stakeholders put forward the view that the best mechanism to resolve this issue is to enshrine in legislation the
provider’s right to access the consumer’s PCEHR without seeking explicit consent unless they are specifically
asked by the consumer not to access their record to view information or to upload content. This will allow provider
software systems to automatically access a consumer’s record for the provider to view unless access is blocked
by the consumer’s access controls and will allow the provider’s software to automatically upload content to the
consumer’s record unless explicitly directed not to by the consumer. This automation will minimise the impost on
the provider’s time and maintains the onus on the consumer to allow or disallow access and uploading of content
to their record.
This proposed model of automatic uploading content to a consumer’s record (unless explicitly directed not to) was
also proposed by consumers who were concerned about the possibility of having to ask their provider each time
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to update their record with details of treatment events. Consumers were concerned that they may forget to ask the
provider to upload content to their record if they had to ask each time.
Both consumers and providers put forward the very strong view that the setting and managing of access controls
by the consumer and the application of the access controls to provider access to the record should be able to be
managed in a very simple way. Many stakeholders drew parallels with the simple way access to social media
networks such as Facebook is managed by consumers and the way access to the PCEHR should be managed.
Consumers proposed simple means for managing access to their record such as the “Friendship Request”
concept of Facebook that once applied allows a “friend” to access their record and/or development of simple
portal or smart device applications (apps) that would allow a consumer to quickly and easily manage their PCEHR
access controls or use of option menus to set different forms of access and consent.
Providers also wanted access controls to work “behind the scenes” so that their software would automatically
determine what access the provider had to a consumer’s record without the provider having to ask the consumer
whether they had a record and whether they could access it.
There was significant discussion in the consultation session about the potential for a consumer’s record to be
accessed by organisations not directly involved in the delivery of care, or persons other than the relevant clinician
within the provider organisation. Many consumers were particularly concerned about the potential for
organisations such as their employer or their private health insurance provider being able to access their record
and use the information in the record to the detriment of the consumer. While it was acknowledged that the
PCEHR legislation restricts access to only registered care providers, consumers were concerned about the
potential for these types of organisations access to their information via intermediaries such as a medical
assessor utilised by their employer or health insurer to conduct a health assessment of the consumer.
Private Health Insurance (PHI) organisations put forward a counter view that they should be allowed to access a
consumer’s record, with consent from the consumer to assist them in managing the health of their members. PHI
organisations are of the view that the community rating system that is used in Australia to set health insurance
premiums prevents them from being able to adversely use any information in a consumer’s health record –
although consultations make it clear that this is not understood by consumers. The value that PHI organisations
see in being able to access information in a member’s PCEHR is to help them identify members who would
benefit from access to additional care services such as the chronic disease management programs offered by
many PHI organisations. If they can target members with interventional and management services that help them
better manage their health then it results in the member being healthier and the PHI organisation reducing the
health care cost outlay that they would have to make if the member was less healthy and needing greater levels
of health care.
The potential for information in the PCEHR to be utilised for medical research purposes provoked a more mixed
reaction in consumers. While some consumers were concerned about the potential for information in their record
to be accessed for medical research purposes, others saw the potential for the PCEHR to be a valuable source of
information for medical research and felt that they would be more likely to participate in the PCEHR if they knew
that it was being used to support medical research. Some consumers did propose the possibility to include a
consent flag on an individual’s record which could be used to flag whether the individual consented to their
information being accessed for medical research purposes.
Consumers felt that the auditing and notifications capabilities for the PCEHR are important as they want to be
able to understand who is accessing their record, even if they choose not to restrict access to it. Consumers were
particularly interested in the potential to receive notifications when “unusual” access to their record was detected.
Examples of unusual access highlighted by consumers included:

A consumer’s record is accessed by a provider who has not accessed their record before

A consumer’s record is accessed by a provider geographically remote from where the patient lives

A consumer’s record is accessed by a provider who has not accessed their record for a long time

A consumer’s record is accessed repetitively by the same provider within a short space of time
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
A consumer’s record is accessed via the “break the glass” emergency access mechanism.
Some consumers were also interested in being able to receive notifications for more routine accesses to their
record such as receiving a notification every time their record is viewed by a provider and receiving a notification
every time a new piece of content is uploaded to their record.
Consumers would like to receive notifications from the PCEHR via a range of different mediums including
conventional mail, email and SMS. Many consumers wanted quite granular control over their notification settings
to enable them to decide what types of events they would receive notifications for and what types of notifications
they would receive (for all events or for each different type of event). Consumers would like a simple-to-use
mechanism such as a Smartphone app or a more simplified patient portal that will allow them to quickly and easily
manage their notification settings.
PCEHR record content and utility and usability
The highest priority record content for providers and consumers was accurate and up-to-date alerts,
allergies and current medications to reduce the risk of adverse events. This should be in an increasingly
usable form (eg. atomic data 1) over time to allow easier reconciliation and to allow information to be
merged with information in local clinical systems. Additional content should be built into the PCEHR over
time (over and above the current content and planned pathology/radiology data) but this should be
developed in accordance with a published, well-structured roadmap.
There was a consistent view amongst stakeholders that the move to an opt-out model will drive consumer
participation and interest in the PCEHR but provider participation and meaningful use will only be driven by the
content and utility of the record. In other words, providers will only participate when the PCEHR is easy for them
to use and provides them with valuable information to support them in the delivery of care.
Clinicians strongly support increasing the utility of the PCEHR – they conceive of utility broadly, involving its
content, in the number of health care providers who are using it and in the usability or user interface provided for
clinicians.
Concerns about the utility of the PCEHR are primarily driven from the poor PCEHR integration that software
vendors have implemented into their software products. This has resulted in very little automation of the
accessing of PCEHR information and poor alignment to clinical workflows resulting in impacts on provider time
and making it difficult for providers to find information and to upload information. While some software providers
have since improved their software, these initial versions have left a poor impression with many providers
resulting in them being reluctant to continue to try to use the PCEHR. Continued work by the vendors to improve
their products and increased engagement between vendors and providers to ensure that software aligns with
clinical workflows will be required to improve software utility.
There are also issues with the way that the PCEHR provides data to the provider clinical systems such as the
(small) amount of detail provided about records such as event summaries which make it difficult for a provider to
work out what care event an event summary relates to and the way documents are not displayed in a useful way
(oldest to newest instead of newest to oldest). These issues make it difficult for the clinical system software
vendors to present information from the PCEHR to their users in a manner that is easy for them to work with.
It will be critical to address these issues of record utility prior to a move to an opt-out model to remove the barriers
to provider participation. If the system remains difficult to use when and if an opt-out model is introduced,
providers will remain reluctant to use the record and consumers will not realise the benefit of having a PCEHR.
The second key factor in providing value for providers through the PCEHR is the content provided in the record.
While providers suggested a broad range of additional content that could be added to the record over time, there
was a very consistent view that the highest priority information to include in the record was:
1
Data reduced to a level that allows the most flexible usage and is the base data for all data
transformations
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
Allergies and alerts;

Current medications;

Current conditions;

Transfer of care summaries (eg. hospital discharge summaries); and

Recent pathology and diagnostic imaging test results.
There was also recognition that the current documents supported by the PCEHR provided the capability to record
the majority of this information, particularly with the inclusion of pathology and diagnostic imaging test results
planned from December 2014.
Providers and consumers both put forward a consistent view that one of the highest priority capabilities that the
PCEHR should provide is a current medications list that is as accurate as possible. While the foundations of this
exist in the PCEHR in the form of the medication information that flows into the PCEHR from PBS, hospital
discharge summaries, outpatient event summaries and community pharmacy prescribe and dispense information,
further work would be required to deliver this capability. To deliver a current medications list requires the ability to
automatically reconcile the various pieces of medication information from all of these sources however much of
the medication information flowing into the PCEHR is not in a computer readable format as it is either in free text
format or embedded in document images. Providing medication information to the PCEHR in a form that would
allow automated reconciliation will require the source systems to be able to code the medication information using
the Australian Medicines Terminology (AMT) and provide the coded medications information to the PCEHR as
atomic data, not as free text or images so that the information can be interpreted and analysed by the PCEHR to
produce a reconciled current medications list.
Moving to a greater level of information being provided to the PCEHR in atomic data format rather than text or
image over time will allow the PCEHR to deliver increasingly sophisticated information and insight to providers
and consumers. Information that is in atomic data format can be analysed and consolidated by the PCEHR
allowing it to deliver automatically summarised and reconciled data across a range of clinical documents (rather
than the shared health summary which has to be manually created) and providing the ability to highlight trends,
patterns and provide warnings.
Providers also discussed the need to provide tools to help manage the growth in a consumer’s record over time
so that the provider is able to quickly and easily locate content that is of interest or importance to their treatment
decisions. A consumer who has a high level of interaction with the health system over a period of a number of
years such as a chronic disease sufferer or a person suffering age related morbidity will very quickly build a very
large list of content in their record. It will be unwieldy for a provider to have to work their way through hundreds or
thousands of relatively recent clinical documents trying to find information pertinent to the current treatment of
their patient. There will therefore need to be sophisticated mechanisms provided to enable searching and filtering
of the record to enable providers to quickly find the content they need. Over time the searching and filtering
capability should be able to become increasingly sophisticated as it becomes able to work with the atomic data
flowing into the record. The speed at which a move to atomic level data can be affected could be critical to
increasing utility, particularly as volume of content grows with an opt-out model.
Providers and consumers suggested a wide range of other content that could be included in the record over time
such as a range of clinical measurements that could be recorded by the provider, patient or derived from home
monitoring equipment. A range of additional demographic factors were suggested such as preferred language,
need for an interpreter and country of origin. Providers were also particularly interested in being able to access
clinical management plans, team care arrangements and patient advanced directives through the PCEHR.
While there was an enthusiasm for seeing the PCEHR enhanced to improve its clinical usefulness there was also
a pragmatic view and understanding by stakeholders that the PCEHR is still in its early stages of development
and that enhancements and improvements would be delivered over time. Stakeholders did however highlight the
importance of providing a publically available and well communicated roadmap for the planned development of
the PCEHR to help manage stakeholder expectations. Stakeholders indicated that they are quite prepared to
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manage with the current limitations of the PCEHR if they know that there is a commitment to improve the system,
and there is a clear timetable and roadmap of what improvements are going to be made and when.
Training and support for the PCEHR implementation
Successful implementation of the PCEHR leading to meaningful use will only be achieved if there is
strong support available to providers at the local level through organisations such as Medicare Locals (or
an equivalent) and professional societies. This will need to be supported with appropriate levels of
awareness raising, training and self-help capabilities aimed at both consumers and providers. Financial
incentives figure strongly in clinical feedback – either through redesign of existing payments or
additional payments that recognise the significant curation that may be required in the early
establishment of a patient’s summary record. Consideration of PCEHR familiarisation/training as a part of
clinician Continuing Professional Development requirements is also an option.
Providers consistently highlighted the need for local, on-the-ground support resources to help support the
technical task of implementing PCEHR enabled software, assist providers to navigate the administrative
processes of registering for the PCEHR, applying for and receiving their NASH certificates, and determining and
managing their HPI-Is and HPI-Os. Support is also required to train providers in how to use the Healthcare
Identfier (HI) Service and PCEHR so that they are comfortable and confident to use it in a patient consultation.
In the early implementation phases of the PCEHR these support resources were provided primarily by the
Medicare Local organisations as well as by professional organisations to a lesser degree. With the cessation of
the Medicare Locals program it will be necessary to find alternative organisations that are able to provide the
necessary local support to providers to help them prepare for interacting with the PCEHR. This could be the
proposed Primary Healthcare Networks or equivalent, however it is critical to recognise the requirement for a
means of providing the local on the ground support that will be required. Without this, much of the clinician
resistance will not be overcome. Support is required both in introduction of new/enhanced software and also in
the modifications of business processes to adapt to and make use of the PCEHR a seamless part of everyday
clinical workflows.
Consumers and providers both highlighted the need to engage with and find ways of enabling and encouraging
provider groups such as specialists and allied health professionals to participate in the PCEHR. From a technical
perspective stakeholders suggested that encouraging or sponsoring the development of smaller and less
functionally rich applications targeted at smart devices may provide a lower cost means of providing software
tools to providers in these sectors.
Providers and consumers both suggested the need for a range of additional support collateral and support
channels accessible by phone, internet, virtual and face-to-face interaction to support awareness-raising in
relation to the PCEHR. In particular, both stakeholder groups suggested the provision of a “sandpit” environment
for the PCEHR which is readily and easily accessible by both consumers and providers and which provides a safe
environment in which individuals can play with a live PCEHR and learn how to use it effectively.
Providers, particularly GPs, are anxious about the time required to curate a patient’s PCEHR in the initial
establishment of the record, and that patients will expect them to be a primary point of information on the PCEHR.
The impost of this on their business functioning and the time commitment required was emphasised. A strong
view was expressed that Government should not expect clinicians to do this without compensation as it was not
their record. On the other hand consumers would not be happy to pay additional for the record.
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Governance and implementation of the PCEHR
There is strong support for improving the governance arrangements for the PCEHR through the
recommendations provided in the PCEHR Review. Improvements to governance arrangements should
include a stronger skills-base for decision making roles and an effective mechanism for achieving broad
stakeholder engagement aimed at involving the “average” clinician rather than (or as well as) the early
adopters and “super-users” to provide input into the governance process. There is also a practical
recognition that the PCEHR is continuing to+ improve over time and consumers and providers are both
willing to manage with this provided there is a clear and publically available roadmap of how the PCEHR
will continue to be developed and improved so that interested stakeholders know when the PCEHR will
improve and evolve.
A broad range of stakeholders including providers, private health insurers, medical indemnity insurers and
vendors all highlighted concerns around the current governance arrangements for the PCEHR and the lack of
involvement and representation of broader stakeholder interests. There was strong support for the changes to the
governance arrangements proposed through the recommendations of the PCEHR review including the
establishment of the eHealth entity, establishment of a new governing board with a greater focus on skills-based
membership rather than simply representational membership and the establishment of a small number of subcommittees with a specific focus on stakeholder engagement.
The majority of stakeholders did not necessarily expect that themselves or their representative organisations will
necessary participate in governance at the board level but do expect that the sub-committee structure will provide
a mechanism for improved stakeholder engagement and representation in the governance process. Stakeholders,
particularly providers were keen to make sure that the engagement mechanisms would be broad enough to
engage with the “average” provider who has limited resources and minimal technical proficiency not just the early
adopters and well known champions of the PCEHR, who tend to have a greater level of technical proficiency and
resources to assist in implementing the PCEHR integration.
Stakeholders also want to be sure that the input they provide into the governance process is going to be listened
to, considered and acted upon where appropriate. Some stakeholders feel that input they have provided in the
past has largely been ignored. There is also an impost on provider’s time which tends to be uncompensated, this
becomes an issue when stakeholders feel their advice and experience is having little impact.
New PCEHR functionality
Vendors are willing to innovate around the PCEHR and implement new functionality to use the data in the
record, but ultimately this will be driven by the demands of their users. In the absence of this they appear
to have little incentive to undertake the cost of functional development. To enable innovation, vendors
will need easy access to increasingly atomic data from the PCEHR through infrastructure that supports
traditional and mobile device access and will also need to understand a more clearly defined (and
adhered to) roadmap for the planned development of the PCEHR.
A number of vendors have invested in enhancing their product(s) to support integration with the PCEHR. This
investment has been co-funded for some by a number of Government mechanisms but not for others. Vendors
participating in the consultation workshops were very keen to make the point that they are primarily small
businesses who will continue to be driven by the demands of their customers. This does not mean that vendors
aren’t willing to continue to develop PCEHR integration and interaction capability into their software but it does
mean that development of future PCEHR capabilities will not necessarily be prioritised over capabilities that have
been requested by their user base.
Vendors are willing to continue to innovate and develop new capabilities within their software to support
integration with the PCEHR, however to enable them to do this they will require access to increasingly atomic
data from the PCEHR to enable them to build more sophisticated capabilities that search for, collate, reconcile
and analyse information from the PCEHR. Vendors are also increasingly interested in being able to access the
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information in the PCEHR through mechanisms that support interaction with mobile devices such as smart
phones and tablets.
To assist vendors to support and exploit new capabilities being developed in the PCEHR it will be necessary to
make available a clear timetable and roadmap that describes the planned development timeframe and
sequencing for the planned development of new capabilities within the PCEHR to help manage stakeholder
expectations. Vendors, like providers, are looking for a tangible commitment from Government that the PCEHR is
going to form part of the long term health care infrastructure. A long term development roadmap and timetable will
provide part of this commitment which will enable vendors to plan the enhancements they intend to deliver within
their planned development cycles rather than having to try to develop new capabilities for the PCEHR outside
their planned development cycles, which is what they believe has happened to date.
Compliance with specifications and standards
Vendors are willing to commit to a compliance regime in relation to specifications and standards
provided that the specifications and standards are developed through a consultative process that
involves the vendor community and also seeks to leverage existing international standards where
possible and appropriate. Specifications and standards need to be stable, fit for purpose and vendors
need to be provided with sufficient lead time and resources to implement the standards and
specifications (or change) into their software ahead of the specification/standard becoming a
requirement.
While vendors are supportive of a standards based approach for development of eHealth software in Australia
they feel that they have had little real opportunity to participate in a meaningful way in the standards setting
process. Vendors feel that they have a lot to contribute to the standards development process but that much of
this expertise and insight has been ignored to date.
Vendors also strongly believe that there has not been sufficient focus on exploiting existing international
standards rather than developing standards that are specific to Australia. The use of international standards
allows vendors to more easily leverage standards compliant software solutions they may have already developed
for international markets rather than having to develop new software capabilities or modify existing solutions to
comply with Australian standards.
Vendors are also critical of the instability of the standards process to date which has seen standards being rapidly
introduced, rapidly withdrawn and rapidly changed. This has left vendors with very little time to make changes to
their products to comply with standards resulting in poor implementation of the standards in their product through
rushed implementation. There have also been inconsistencies between standards and support resources
provided by standards setting bodies such as NEHTA resulting in confusion as to which is correct, delays and
testing and compliance issues.
For vendors to commit to and support a standards based approach for software in Australia they require:

A robust and collaborative standards development process which delivers standards that are fit for
purpose and that exploit existing international standards where appropriate;

Sufficient lead time to implement and test standards compliance within their software solutions;

A robust, transparent “black-box” testing process and testing tools that makes it easy and cheap for
vendors to test the compliance of their solution with the standards and receive meaningful feedback if
the testing fails; and

A clearly defined roadmap of the planned PCEHR development over the next three to five years
describing when new functionality will be implemented in the PCEHR, when new standards are available
or standards will be changed (sufficiently far ahead of expected PCEHR development timeframes) and
when standards compliance will be required by vendors (with sufficient lead time for development and
testing).
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