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Board
Agenda Item 4
CEO Report
Meeting: 6 December 2018

Official

MY HEALTH RECORD
On 14 November, the Hon Greg Hunt MP, Minister for Health (the Minister) agreed to extend the opt out
date to 31 January 2019 — a milestone in the high profile and welcome debate about the role that My
Health Record (MHR) and digital health more generally can play to support improved health and wellbeing
in Australia.
If we look back on the really major reforms of the past 40 years, they have happened with considerable
community interest and debate, with the engagement of all political parties, and frequently involved
modification as a result. This is healthy civic and political democracy at work — and a signal of the
importance of MHR as a reform.
On 15 November, the Senate passed the My Health Records Amendment (Strengthening Privacy) Bill 2018
(the Bill). The Bill will need to go back to the House of Representatives, which sits again on 26 November 2018. If
passed by the House of Representatives in its current form, it will then be assented and become law.
A key operational change is the extension of the opt out period to 31 January 2019 in light of the legislative
timetable. We are currently working through the nature of the Australian Digital Health Agency’s (the
Agency) activities during this extension and will update you when those plans have been clarified. It is
important to note that if the legislation is enacted, it will mean that people can permanently delete their
MHR at any time after 31 January 2019 — in effect, to opt out at any point thereafter. The Agency will
continue to support community awareness and understanding of MHR as well as explain the implications of
the legislative changes while improving provider connections and clinical adoption of the service.
There are a number of amendments in the Bill that strengthen MHR’s privacy and security protections:
Briefly, the changes will:
     •     confirm the current Agency policy that law enforcement agencies can only obtain access with a
           court or similar order;
     •     confirm the prohibition on access to MHRs for insurance or employment purposes within the My
           Health Record Act 2012;
     •     remove parents as authorised representatives when a child turns 14 — meaning they will not
           have default access to that child’s MHR unless given express approval to do so by the record
           recipient;

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     •    strengthen existing protections for people at risk of family and domestic violence;
     •    allow Australians to permanently delete their records, and any backups, when they cancel their
          record;
     •    clarify that the Agency cannot delegate its powers to anyone other than the Department of
          Health (Health) and the Chief Executive of Medicare;
     •    make clear that the system cannot be privatised or used for commercial purposes; and
     •    make the principles contained in the Framework to guide secondary uses of data law.
This will be backed up by harsher penalties and fines for inappropriate or unauthorised use.
The legislation and record of the debate is available on the Australian Parliament House website.

Budget Estimates
On 24 October 2018, the Agency appeared alongside Health for Additional Budget Estimates. We were
asked a number of questions regarding MHR, focusing on the communications activities, making system
changes to give effect to hard delete, and some of the clinical and consumer feedback received by the
Senate Committee on the MHR system.

Consumer communications
Consumer communications and engagement has been significant during the opt out period, covering
numerous channels including, but not limited to, print, video, radio, social media, digital, community events
and a television campaign. Key communication materials have been translated into over 19 languages,
including several Indigenous languages. These activities have given more than 10 times reach across the
eligible population, which includes temporary and permanent residents as well as Australian citizens.
The focus of resources and communication activities based on research, has been to educate Australians
and their trusted healthcare providers about MHR and how it benefits them, and to inform Australians that
they will get a record in 2019 unless they choose not to have one.
Information has been made available in over 15,000 health care locations including general practices (GP),
pharmacies, public and private hospitals, and via Aboriginal Medical Services and National Aboriginal
Community Controlled Health Organisations. Australia Post has provided information on MHR via over
4,000 post offices, including over 2,000 rural and remote locations, reaching up to two million Australians
over the three month opt out period. MHR information has been included in all Medicare letters sent out
during the opt out period, and information is also available at libraries nationally.
Hundreds of national and local advocate organisations — the Consumers Health Forum of Australia among
them — are also promoting awareness through their networks. 31 Primary Health Networks (PHN) have
conducted more than 3,200 community events during the opt out period.
Awareness and education has continued across the country for registered health practitioners, in
partnership with clinical peak bodies, such as the Royal Australian College of General Practitioners (RACGP),
the Pharmacy Guild and Pharmaceutical Society of Australia (PSA), PHNs, jurisdictions and private
providers.
The primary focus of media reporting has continued on the security and privacy of the system, the
protections in legislation around third-party access to records, particularly by law enforcement agencies,
and subsequently the Minister’s announcement of the proposed amendments to legislation.

DIGITAL HEALTH EVIDENCE REVIEW
The Digital Health Evidence Review launched on the Agency’s website on 17 October 2018. The review
describes international approaches to providing people and their clinicians with access to shared digital
health information and resources. It has been written for those who want to learn more about Australia's

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MHR and other similar systems around the world that provide shared health information to people and
their clinicians.
The review shows MHRs consumer-centred privacy controls are world leading. Out of the 50 countries
surveyed, the Digital Health Evidence Review found:
    •    only Australia and France allow individuals to edit or author parts of their record;
    •    only 32 per cent of surveyed countries have legislation in place that allows individuals to request
         corrections to their data; and
    •    only 28 per cent of surveyed countries have legislation that allows individuals to specify which
         healthcare providers can access their data.
The review drew on a variety of research sources, including academic peer-reviewed literature,
government reports and white papers, World Health Organisation (WHO) data, and other information
sourced from international governments and agencies responsible for the delivery of digital health services.
The review has also been independently reviewed by Research Australia.

ENGAGING WITH THE COMMUNITY
In October, I spoke at the Rural Medicine conference in Darwin, hosted by the Australian College of Rural
and Remote Medicine (ACRRM) and the Rural Doctors Association of Australia (RDAA). It’s always an
inspiring event, bringing together healthcare professionals from across Australia (some arriving in their own
planes).
The people I met in the Northern Territory (NT) need no persuading of the benefits of digital health. For the
last year, colleagues from NT Health, the PHN and Aboriginal Medical Services Alliance Northern Territory
(AMSANT) have been working together with partners in clinical and consumer peaks, and with community-
controlled health organisations and other providers to make sure clinicians and communities in this vast
territory know about MHR and their rights to opt out if they choose. It has been an enormous undertaking
— in communities from Barunga to Arnhem Land, workshops and information meetings have been held.
Mae Mae Morrison, an Aboriginal woman working for AMSANT, has been working with shared health
records since 2004. She told me that she went to Ski Beach recently to meet Galarrwuy Yunipingu, who
helped his father draft the Bark petitions in 1963 (the first traditional documents recognised by the
Commonwealth Parliament). He thought MHR was a good thing for his community. He explained that “the
record followed me when I travelled to Adelaide and got my kidney”. Mae Mae said: “We talk about closing
the gap — and the hole is massive — but if I have a laptop I can help”.
The NT, like much of remote and rural Australia, has a distinguished history of innovation in digital health.
MHR is just part of a broader initiative to take advantage of technology to promote outcomes here. There
are plans for a new shared care planning tool and the NT is investing in a region-wide record sharing
scheme.
I also met with the Hon Natasha Fyles MP, Attorney-General, Minister for Justice and Minister for Health,
who said that NT fully understood the benefits of digital services and strongly supported MHR and
implementation of the other priorities of the National Digital Health Strategy.
At the beginning of November, I travelled to Perth and visited service leaders in Western Australia (WA). I
also briefed Deputy Premier and Health Minister, the Hon Roger Cook MLA, on progress on strategy
priorities including secure messaging, interoperability standards, the children’s digital health collaborative
and the innovation test beds. Deputy Premier Cook addressed the Health Information Technology WA 2018
conference (at which I also spoke) and told delegates — drawn from the health informatics community
across the state — that MHR would help shape the future of Australian health care.

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I also visited staff at the Fiona Stanley and St John of God hospitals. Staff in both wanted to understand
more about how MHR and the broader Strategy can support them in delivering improved patient
outcomes. Royce Vermeulen, Chief Information Officer (CIO) of St John of God hospital, opened a staff
forum stating: “We can’t wait to have the majority of our patients with a MHR so we can start delivering
better care. It’s a very exciting time and we are very excited with the Expansion of the My Health Record”.

IMPLEMENTING THE NATIONAL DIGITAL HEALTH STRATEGY
Priority 1: My Health Record
Provider readiness

A national program of provider readiness has been undertaken to ensure healthcare providers are aware of
the forthcoming opt out period. Awareness and user training in MHR continues across the country for
registered health practitioners in partnership with jurisdictions, private hospitals, PHNs and clinical peak
bodies such as the RACGP, PSA and Pharmacy Guild. The provider readiness program is currently focused
on driving adoption and use of the MHR to support the wide scale registration of health organisations and
the anticipated high volume of consumers with a record at the conclusion of the opt out period on
31 January 2019.
Connections
The MHR connections program continues to focus on improving the availability of clinical content essential
for consumer benefits associated with MHR.
By early November, 75 per cent of community pharmacies in Australia had registered for MHR with more
than 40 per cent uploading and we expect that the majority of pharmacies will be connected by the end of
the year. The Agency has a strategy in place with vendors to ensure that registration is promptly followed
by activation of their software. This will ensure pharmacies can start uploading information to the MHR
system, with 80 per cent expected to be able to do so by the end of the financial year. In the diagnostics
sector, 39 per cent of public and 35 per cent of private pathology laboratories are now connected and we
expect this to steadily rise in December. 39 per cent public and 15 per cent of the private providers of
radiology are now connected and uploading, and this number is also predicted to increase in December.

Priority 2: Secure messaging
The secure messaging proof of concept trials are now in the final stages of completion and post-
implementation reviews are being planned. Significant progress has been made that demonstrates
collaboration between clinical information system and secure messaging vendors in developing and
adopting consistent standards-based approaches to secure messaging. For the first time, software suppliers
are agreeing to share provider data with each other to improve how information is exchanged across the
health landscape using different software applications. In our proof of concepts projects we have secure
messages being sent from a healthcare organisation with one clinical information system and messaging
vendor, and being received by a difference clinical information system and messaging vendor, with a
received receipt sent back. While this may appear a simple exchange, this transaction has been
unattainable until now, unless bilateral deals were struck between individual vendors. Our work developed
the standards necessary to achieve this interoperability, which will allow and vendor to participate without
having to broker time consuming deals with every other player in the market.
The next steps will focus on software supplier and user adoption at a national scale through the
establishment of communication and adoption strategies. This work continues to progress the adoption of
consistent and trusted electronic messaging that can flow securely from one provider to another —
irrespective of the technology platform they are using, and enable us to finally ‘axe the fax’.

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Priority 3: Interoperability

Following preliminary co-design with jurisdictions, consumer and clinical peaks, industry and others, a
national consultation on interoperability standards for both public and private providers of healthcare in
Australia will start in early 2018 after approval in November by states, territories and the Commonwealth.

Priority 4: Medicines Safety
Pharmacist Shared Medicine List
The Pharmacist Shared Medicines List (PSML) – formerly known as Pharmacy Curated Medicines List will
provide a consolidated view of a person’s medicines from a pharmacist; the professional responsible for
quality assuring this consolidated medicines list. This will implement the PSML to at least four sites by
March 2019 (aligned with MHR release 10.1) and have 150,000 PSMLs uploaded to the MHR system by
June 2019.
National Digital Medicines Safety Blueprint
Initial stakeholder engagement for the National Digital Medicines Safety Blueprint commenced at the end
of October with the Medicines Safety Program Steering Committee. This engagement has been used to
inform the project plan and stakeholder engagement plan for development of the Blueprint. Subject matter
expert interviews are now being conducted and formal focus group workshops are being planned. The
Blueprint will be finalised by early 2019, providing clear direction to the Agency and key delivery partners
on the sequencing of digital medicines safety projects over the next three years.
Electronic Prescriptions Project
In the 2018–19 Commonwealth Budget, the Commonwealth announced that it will provide $28.2 million
over five years to upgrade the e-prescribing software system used by clinicians to prescribe medicines. This
will support a national electronic prescribing system that will contribute to the Pharmaceutical Benefits
Scheme (PBS) efficiency, compliance, drug safety and data collection. It will also create an electronic
prescribing framework that will provide an option for prescribers and their patients to have a fully
electronic PBS prescription as an alternative to paper-based PBS prescriptions.
The Agency has been funded to deliver the technical framework for dispensing, prescribing and prescription
exchange software systems through a co-design process with key stakeholders such as clinicians,
jurisdictions and software vendor groups. The intent is to use established information technology systems
such as the existing prescribing, dispensing vendors and prescription exchange services (to support patient
choice in primary care settings) and develop a framework that leverages components of the broader digital
health infrastructure. For example, prescribers who are already using electronic systems to send medicine
information to the MHR will be able to use the same authentication and secure messaging formats with the
content being specific to that required for a prescription. This will ease implementation and reduce
potential clinical workflow impacts.

Priority 5: Enhanced Models of Care
Test Beds
The majority of Test Bed projects are currently finalising their project plans in response to Agency feedback;
a number of Test Beds have baselined their plans and several have provided baseline data reports. Others
are in the last stages of finalising industry and organisational partners or recruitment sites for their Test
Beds. Some Test Bed projects will experience a delay as a result of the extension of the consumer opt out
period for the MHR.

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National Children’s Digital Health Collaborative
Governance for this program has now been established and the ‘baby book’ minimum dataset harmonised
across all states and territories. Proof of concepts are now being established for the child digital health
record and design and data harmonisation work commenced on digital pregnancy health records and child
digital health checks. All states and territories are working towards these important projects that will make
a real difference to Australian families and achieve the program’s vision — to make Australia the best place
in the world to raise children.
Health literacy study
The MHR move to an opt out model has increased the Australian community’s exposure to health
technology. To ensure that all community groups can optimise the benefits of MHR, we need a deeper
understanding of people’s ability to access and use digital technologies to maximise equity of service
provision. We have partnered with the Western Victoria PHN and Deakin University, School of Public Health
to conduct an e-health literacy research study in the rural town of Ballarat, Victoria in order to co-develop,
with the community and service providers, education, technical and awareness solutions that can empower
community members to use digital technologies — specifically MHR — to manage their own and their
family members’ health.

Priority 6: Workforce and education
The Agency has established partnerships with more than clinical peak organisations to promote clinical
training and adoption of digital services, including the Australian Medical Association, RACGP, Allied Health
Professions Australia, Australian Association of Practice Management, Pharmacy Guild and PSA. A new
national CIO network to champion digital health among healthcare providers has also been established in
partnership with the Health Informatics Society of Australia and Australasian College of Health Informatics.

Priority 7: Driving innovation
The RACGP completed the definition of minimum requirements for general practice software through 2017
and 2018. The Agency is now determining the path forward for each domain for minimum requirements —
through standards, program design, conformance or accreditation mechanisms.
Global Digital Health Partnership
On 3–4 September 2018, I chaired the third summit of the Global Digital Health Partnership (GDHP) in
London. The GDHP, which now involves 22 countries and the WHO, has prioritised five key areas for
international collaboration including interoperability, policy environments, clinical and consumer
engagement, evidence and evaluation and cyber security. Working on these issues together allows us to
accelerate their development and implementation in our own countries. The meeting was hosted by the
Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care and Lord James O’Shaughnessy,
Parliamentary Under-Secretary for Health. It addressed a range of issues, besides the work plan, including
the challenges and opportunities of artificial intelligence and we heard from a number of global experts on
that subject.
The Agency is currently working closely with the Ministry of Health and Family Welfare (Government of
India) to plan the fourth GDHP summit which will take place in New Delhi in 2019. Hon Shri Jagat
Prakash Nadda, Minister of Health and Family Welfare is inviting 40–50 health ministers from around the
world to attend, including existing GDHP participant countries. The Director General, WHO, Dr Tedros
Adhanom Ghebreyesus, is expected to attend with the Deputy Director General of Programmes, WHO,
Dr Soumya Swaminathan.

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IMPLEMENTING ORGANISATIONAL EXCELLENCE
Organisational review
In September we undertook an organisational review in order to position the Agency for success into the
future and we have had a smooth transition into our new structure. We will continue to work through
operational details to embed the changes over the coming months. Our priorities are to shape our
capabilities to ensure the best possible delivery of the Public Governance, Performance and Accountability
Rule 2014 (the Rule) and annual work plan objectives, and to operate as efficiently as possible, mindful
always of our obligation to ensure that our overheads are as lean as they can be. Over the last two years,
we have achieved a great deal, put new energy behind the opportunity for digital in Australian healthcare
and learned much about improved ways of working to support our high performing team — those lessons
have been key in developing our new operating model.
The first priority of the Agency is our outstanding team and we have established new leadership and
performance frameworks to recognise and measure cultural behaviours that ensure ‘how’ we achieve
success is just as important as ‘what’ we achieve.

Grand Rounds
We have held three Grand Rounds events recently — these are morning tea or lunch events where expert
speakers brief Agency staff on a topic related to the National Digital Health Strategy. The first was with
Barry Sandison, Chief Executive Officer of the Australian Institute of Health Welfare (AIHW). Barry spoke
about the role of the AIHW in assisting with the quality of data and governance and building a stronger
evidence base for digital health. The second was with Dr Steven Gipstein MD who leads Worldwide
Healthcare Markets at Apple. Steven gave a talk focused on technology as an enabler of good health care,
consumer devices and emerging trends in consumer devices in health.

Our third event was in mid-November with Bettina McMahon hosting a panel discussion in our Sydney
office with Dr John Halamka, CIO at Beth Israel Deaconess System, and International Healthcare Innovation
Professor at Harvard Medical School; and Grahame Grieve, Principal, Health Intersections, Founder and
Product Director for FHIR®. Both John and Grahame offered unique insights into international digital health
developments, the role of standards, communities of practice, and the way that each country's history and
culture presents distinctive challenges and opportunities in the quest to modernise their respective health
systems.

CLEARED BY                  Name          Tim Kelsey

                            Position      Chief Executive Officer

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