New Zealand Digital Health Strategy - Digital Health Strategy Framework - NZ Health IT

 
New Zealand Digital Health Strategy - Digital Health Strategy Framework - NZ Health IT
New Zealand Digital Health Strategy
Digital Health Strategy Framework

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New Zealand Digital Health Strategy - Digital Health Strategy Framework - NZ Health IT
Capabilities
Digital Capabilities are disciplines and considerations that underpin and support the creation and use of effective
digital health services by individuals, groups and organisations within the digital health ecosystem.

This Strategy does not specify the digital health services – for example an electronic referrals service - that will
exist within the digital health ecosystem. Every participant will make informed decisions about those digital
health services they require and as each participant is unique the digital health services utilised will differ
between agencies and constantly change over time. For example an electronic referrals service may be
superseded by an integrated care workflow service.

Making decisions independently but with full visibility and awareness of the digital environment and the actions
of others will amplify successes. Each agency, including the Ministry, will formulate plans that describe the digital
health services they will invest in and deploy to move from a current state to a defined future state that is
aligned to this Strategy.

Instead of specifying digital health services, this Strategy describes six capabilities that should be considered and
applied by agencies to maximise the impact and success of any digital health service.

Governance and capability
Governance of the creation, implementation and maintenance of digital health services is critical in ensuring that
an organisation’s information services strategic plan (to use a standard term) is successfully implemented and is
aligned with business strategy, and that digital health services are robust and effective.

By following formal and accepted “good practice” frameworks, organisations can produce measurable results
toward achieving their strategies and goals and manage risk. There are many forms of governance that need to
be considered and many governance frameworks that could be applied. In the NZ technology environment the
most important are (noting that the frameworks referenced are not the only options available to organisations)

         Information Technology (IT) governance: Governing and managing the performance of an
          organisation’s IT core functions including strategy and planning, architecture, risk management,
          security, change and delivery, programme and project management, service management and
          operational management. Commonly used frameworks are COBIT; ITIL; TOGAF; MSP and PRINCE2.
         Data and Information governance: Data and information governance is a set of processes that ensures
          that data and information can be trusted and that data and information assets are fit for purpose and
          that their value is fully realised. In a health context, health information governance is an important
          aspect of data and information governance that applies policies, procedures, processes and controls to
          the handling of personal health information. The Department of Internal Affairs publishes a Data and
          Information Governance Framework. Statistics NZ has a formal data governance role with a data
          system focus though the appointment of the Government Statistician as the government’s Chief Data
          Steward. The Health Information Governance Guidelines provide essential policies and guidelines on
          how to share health information safely.

Having the people capability to execute on the strategic plan is equally important. Capabilities in service
management, programme and project management, cybersecurity, data and information governance, person-
centred design, service design and data science are priorities.

Currently
Most (if not all) organisations utilise some form of IT governance policies and processes. ITIL is commonly
referenced and adapted by health organisations although its use is variable beyond the core processes of service

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New Zealand Digital Health Strategy - Digital Health Strategy Framework - NZ Health IT
operation. MSP and PRINCE2 are commonly referenced and adapted by health organisations although their use
is variable. COBIT is not as widely used, and other frameworks are rare.

Data and information governance is not widely applied formally although most organisations will have some level
of policy and process in areas such as data quality and data asset management. Health organisations understand
the importance of keeping data secure and controlling its use and all health organisations have implemented
some form of health information governance. There is variability across the sector in the level of maturity over
information governance and interoperability.

The level of implementation depends on the awareness, capability and capacity of the organisation. The Health
Information Governance Guidelines (the Guidelines) were published in September 2017. With the increase in
digital health services and information sharing there is an urgent need for increased maturity in this area.

More specifically, the demand for higher levels of access to health information to support better care
management and decision making continues to grow in line with the use of digital technology. Consumers and
health providers want assurance that personal health information is accurate, easily accessible and kept
confidential, secure, protected from unauthorised access and able to be shared securely. It is unclear how much
attention is given to ensuring consumer and health providers’ trust in information captured within systems is
maintained.

Organisations typically have traditional technology expertise, but lack people capability in areas of change
management, data and information governance, cybersecurity, person centred design, service design and data
science.

In the future
The criticality and reliance on digital health services has increased and all organisations have mature governance
disciplines and capabilities in all areas but especially for data and information (including health information)
governance.

The number of consumers that utilise digital health services to navigate the health sector has grown significantly
due to an increased consumer confidence that their personal health information is accurate, and easily
accessible, secure, protected from unauthorised access and able to be shared securely. Health providers are also
confident that the personal health information is accurate and easily accessible, and trust that the information is
shared securely. Consumers have access to their own health information and use it to proactively manage their
own health and wellbeing.

Those organisations providing digital health services to consumers have developed mechanisms to ensure that
personal health information is accurate, easily accessible, secure, protected from unauthorised access and
information is shared securely. Governance over the collection, use and disclosure of personal health
information is led by the top and fosters a culture that values, protects and uses information for the benefit of
consumers. High standards are set for the handling of personal health information and staff and service providers
have the tools and training to achieve these standards.

Organisations have people capability in person centred design and are expert in managing both the technology
and change aspects of the creation and use of digital health services. Data insights are applied to the ongoing
improvement to health services.

Next steps
Organisations review their current level of maturity and practice against good practice guidelines and
frameworks in all identified areas and identify priority areas for improvement. Similarly organisations review
their capability especially in key areas of data and information governance, cybersecurity, person centred design,
service design and data science.

Health service providers take advantage of the Data and Information Governance Maturity Questionnaire
provided by Department of Internal Affairs to determine its information governance programs and practices and
build capability. Senior management develop tools and training to support the promotion of information
governance within their organisation

Health sector organisations that capture, store and share personal health information have a planned program of
work to adhere to the Health Information Governance Guidelines.

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References
1.   Privacy Act 1993 http://www.legislation.govt.nz/act/public/1993/0028/latest/DLM296639.html
2.   Health Information Privacy Code 1994 https://www.privacy.org.nz/the-privacy-act-and-codes/codes-of-
     practice/health-information-privacy-code-1994/
3.   The Health Information Governance Guidelines http://www.health.govt.nz/our-work/ehealth/digital-
     health-standards-and-governance/health-information-standards/approved-standards/hiso-100642017-
     health-information-governance-guidelines
4.   Data and Information Governance Toolkit. https://www.ict.govt.nz/assets/Guidance-and-Resources/Data-
     and-Information-Governance-and-Maturity/Data-and-Information-Governance-Toolkit-Guidelines.pdf

Consumer experience
Digital technologies are rapidly changing the way that people manage their health and wellbeing and
transforming the nature of healthcare delivery. The relationship between clinician and health consumer is being
levelled, decisions are now shared, and care is being democratised by access to digital technologies and
information that empower individuals to make informed choices about their health and wellbeing.

Such a change signals a shift in traditional roles for consumers and health professionals where a consumer is
defined as any consumer of health services including the individual’s carers. No longer is the consumer a passive
recipient of health services.

It is also important to recognise that individual consumers have very different attitudes to the use of digital
technologies, to potential changes from face-to-face to digital health services, to privacy and trust and so on. No
single approach will work for everyone and we must replace the urge to create “one system for everybody” with
a philosophy that accommodates a broad range of experiences.

In today’s digital health ecosystem taking a person-centred design approach to the creation of digital health
services is critical in delivering consumer-centred health experiences. The needs of individual consumers should
fundamentally drive the design, development and implementation of solutions.

An understanding of the lived experience of people should continue to refine and improve digital health services.

Currently
We are operating in a health sector where there is a power imbalance, with the power being held by those who
provide our care and control access to people’s own health information.

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From a consumer perspective the sector is currently ‘provider centric’ and paternalistic. It is focused more on
illness than wellness and digital systems are focused on organisational workflows and needs rather than
consumer experience. Digital systems are siloed, difficult to access and navigate, and information is not shared
across the wider sector including private providers. As a result consumers need to continuously repeat
information. Consumer focused digital health services are considered an “add-on” to the digital systems used by
sector organisations.

For some consumers there are issues around privacy, which has led to a lack of trust regarding the sharing of
information. However, other consumers believe that information is already shared between health providers
and are surprised when they discover it is not. There are significant barriers that make it very difficult for
consumers to access their personal records.

Information that is collected is also often limited to specific health information and services and does not include
social and personal information which affects a consumer’s health and wellbeing. For some health care providers
there is little to no recognition of the private or NGO delivery of health services, nor visibility of access to
alternative health care or self-care.

Person-centred design is being increasingly applied to the creation of new digital health services, however it is
yet to become a core capability within and across organisations.

In the future
Care is being democratised by access to digital technologies and information that empower individuals to make
informed choices about their health and wellbeing.

A person-centred design approach is taken to the creation of digital health services and the needs of individual
consumers are driving the design, development and implementation of solutions. Consumers and health
providers work in partnership to co-design solutions. Consumers lived experience is measured as part of the
delivery of any service and changes made based on feedback.

For example the Ministry of Health used a human-centred approach as part of a business case development
process to gain insight into how and where an Electronic Health Record could better support health and wellness
and identify key user needs and wants.

A shift away from organisation-centric digital systems means that consumer centric digital health services:

         have seamless access to information
         can act intelligently on information
         take into account the broader social and individual context, as well as cross sector involvement,
          allowing the consumer to choose their level of involvement in their care

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    include all components of the health sector – public, private and NGO’s
         allow consumers to add information including data from any bio-sensing devices

In accordance with the New Zealand Disability Strategy1, information and communications are easy for disabled
people to access in formats and languages that are right for them. Disabled people use technology on the same
basis as everyone else. Those who need specific technology solutions will have access to these in a way that is
innovative, progressive and helps to eliminate barriers. The evolving opportunities presented by new technology
helps disabled people to achieve their goals. This means that:

         Universal design is understood, recognised, and widely used
         All professionals involved in accessibility have a good understanding of the principles of universal
          design and the needs of disabled people, taking these into account in their work
         Decision-making on issues regarding information, communication and technology is informed by robust
          data and evidence.

The integration of social, personal and health data leads to a more holistic record where consumers will become
partners in their health care.

The use of digital health services by consumers is commonplace whether to; access an individual’s health
information; interact with health providers; use online patient communities to exchange experiences with
patients and carers; access virtual health services; diagnose illness; research information; identify treatment
options; rate providers and so on.

Next steps
Organisations review their current level of capability and approach to digital health service design against good
person centred and user experience design practices to identify area for improvement.

Identify opportunities to engage consumers and others in the design of digital health services especially around
usability and access. This should be a team approach of clinicians, consumers, providers and technology partners
and should include governance.

Invest in digital health services - such as health provider consumer portals or mobile apps - that enable
consumers to have open and easy access to their own health information. For consumers who choose not to
access digital health services ensure that the sector still provides alternative channels.

Consider mechanisms that can provide guidance on the quality and purpose of health related apps, websites and
online community groups to give consumers confidence in access to relevant digital health services.

References
1.   User experience design resources https://www.interaction-design.org/literature

Service collaboration and design
Digital technologies are rapidly changing the way that people manage their health and wellbeing and
transforming the nature of healthcare delivery.

The democratisation of healthcare empowers individuals to make informed choices about their health and
wellbeing and demands collaboration and real time, flexible information access across agencies, organisations,
and individuals within the digital health ecosystem.

Organisations that cannot support digitally enabled health services and workflows will not be able to survive in a
highly connected and collaborative digital health ecosystem. Organisations must be highly digitally mature.

Similarly, digitising existing workflows without leveraging the opportunity to design services that are focused on
the needs of the consumer and cross organisational boundaries, where required, will be sub-optimal.

1
 New Zealand Disability Strategy 2016–2026, Office for Disability Issues http://www.odi.govt.nz/assets/New-
Zealand-Disability-Strategy-files/pdf-nz-disability-strategy-2016.pdf

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Design thinking reframes problems in human-centric ways and involves on-going experimentation and testing to;
gain a deep understanding of users; critically examine assumptions;and test solutions. This person centred
approach in the context of a digital health ecosystem requires collaboration across participants and will break
down the organisational silos that exist.

Currently
Health technology deployment in the health sector has historically been organisation-centric and focused on
supporting specific business functions, usually with specific applications. Projects have implemented specific
technology solutions usually in the absence of an overarching enterprise view. Where workflows, whether
clinical or business, require information to be shared, integration has been built on a case by case basis. In many
cases, information is not accessible outside of the host application.
This approach has resulted in varying levels of digital maturity across health organisations and a complex digital
landscape in many. The level of investment in digital health services, and the supporting technology
infrastructure, has meant that while new services are being created, existing digital health services are not
always maintained and improved in line with changing business needs or the opportunities presented by
emerging digital technologies. For example, a large DHB may be running 600+ different types of application and
a mix of different supporting infrastructure.
In the last 10 years, in line with changing technology capability and business service changes, there has been a
drive towards shared systems and information flows across organisations. These changes have however typically
retained an organisation-centric perspective and have increased, rather than reduced, the complexity of the
technology environment.
In direct contrast, smaller health organisations may not have been able to invest in digital technology and have
very little digital capability or ability to share information with others.
Organisations are seeking to invest in improved digital health services – and address the current complexity - and
a service collaboration and design approach is being applied in some instances, although this remains the
exception.

In the future
Health technology deployment in the health sector follows a service design approach and understands the need
to collaborate across participants including the consumer.
Health organisations are digitally mature and have strong service design people capability.
Digital health services are created within an enterprise context and information is accessible in real time when,
and where, it is needed.
An increased level of investment in digital health services, and the supporting technology infrastructure, is
addressing the underlying complexity of the legacy digital environment within organisations. This means that
core digital health services are continually updated and improved in line with changing business needs and the
opportunities presented by emerging digital technologies. All health organisations have digital capability and an
ability to share information with others.

 The Consumer voice
 Current experience                                     Possible future experience
 “I went to the optometrist who referred me to an       “I went to the optometrist who referred me to an
 ophthalmologist. She used google to find an            ophthalmologist. She used Google to find an
 ophthalmologist nearest to me (in another city).       ophthalmologist nearest to me (in another city). An
 Referral was by email. Given that both are private     electronic referral was done directly to my specialist of
 providers no NHIs were used so I guess that the        choice. My GP was alerted to the eReferral and it was
 message exchange was secure? A copy of the             visible to me from my electronic health record. The
 email also got sent to my GP – but nothing to me.      specialist practice acknowledged receipt of the referral
 The optometrist gave me three signs to watch for       and directed me to a web-based booking form so I
 and if any presented I needed to go to ED. By the      could select a time and date that suited me for the
 time I got home I could only remember two of           appointment.
 them and besides ringing the practice I have no        The optometrist gave me three signs to watch for and if
 way of confirming what the third one was.”             any presented I needed to go to ED. A link was
                                                        available on my electronic health record so I could
 Experience as told by consumer.                        review the advice that the optometrist gave me.”

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Next steps
Organisations review their current level of digital maturity and prioritise investments that will address the
complexity of the underlying technology environment, lift digital maturity, and enable service collaboration.
Organisations review their people capability and methodologies against good service design practices and
identify areas for improvement.
Identify opportunities to apply service design to digital health services with a collaborative approach.

References
1.   Designing for public services https://www.nesta.org.uk/sites/default/files/nesta_ideo_guide_jan2017.pdf

Data insights
Production of data from new and emerging technologies will continue to accelerate at an exponential rate and
provide new ways, for example through analytics and artificial intelligence, to take advantage of the offering of
real-time big data to gain insights and take action.

Data is being created and shared from many sources – such as consumer mobile and wearable technologies; data
from online activity; home devices and sensors; the ‘Internet of Things’; traditional health organisations; data
from non-health organisations (for example social or education agencies); and commercial organisations (such as
retailers).

Maintaining security, trust and confidence in digital systems and data use while linking and sharing data to
provide insights will be a complex and ongoing challenge (refer the Security, Privacy, Trust enabler and the
Accessible, Trusted Information capabilities). Similarly, enabling data architecture and standards and core
foundation services such as digital health identity (refer the Interoperability, Architecture and Standards, and
Foundation Services enablers) are critical pre-requisites for data insights.

Data insights will uncover nuances and patterns that were previously hidden and apply them to empower
consumers through enhanced digital health literacy and consumer applications to; make informed and
evidence-based decisions that improve health outcomes; support population health planning, preventative
health initiatives and research; improve health system performance; and support precision medicine initiatives.
Data insights will be important for both the health agencies in planning services and the individual wanting to
better manage their own health and wellbeing.

There are many existing examples of the use of data insights to improve health outcomes. These include
consumer applications utilising artificial intelligence and machine learning, precision medicine initiatives and the
use of genomics data, health data in NZ being used as part of the Integrated Data Infrastructure, or
organisational analytics to improve system performance. Forrester, an American market research company that
provides advice on existing and potential impact of technology, reports 74% of firms say they want to be “data-
driven,” but only 29% are actually successful at connecting analytics to action.

Organisations must be positioned to leverage the potential of data insights and respond to an expectation of real
time data linking and use while maintaining consumer trust and confidence.

Currently
Organisations within the health sector collect an immense range of data and produce a wide range of
information. While much of this is locally created and used, there are many instances of links being used to other
regional, national or even international datasets. For example, the Ministry of Health provides data to the
Statistics NZ managed Integrated Data Infrastructure (IDI) which is a large research database containing
microdata about people and households. Datasets include:

         B4 School Check
         Cancer registrations
         Chronic condition/significant health event cohort
         General Medical Subsidy (GMS) claims data
         Health Tracker

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    Laboratory claims data
         Mortality data
         National Immunisation Register (NIR)
         National Needs Assessment and Service Coordination Information (SOCRATES)
         National Non-Admitted Patient Collection (NNPAC) data
         Pharmaceutical data
         PHO enrolment data
         Population cohort demographics
         Population cohort addresses
         Programme for the Integration of Mental Health Data (PRIMHD)

The IDI is primarily a research and analytics for policy making database. Data is typically not used to provide real
time data insights and is commonly limited to historical data collected for specific purposes and based on more
traditional data warehousing architectures.

The use of consumer generated data is not common. Data insights to inform precision medicine is in very early
stages and consumer access to data insights is rare.

Within some systems the lack of information can mean a lack of certainty around what services consumers are
entitled to receive, leading to inequity of outcomes for some groups, i.e. Maori, Pacific Islanders, people living in
high deprivation areas, and people with disabilities.

Organisations have varying levels of maturity in data analytics to gain data insights.

In the future
New and emerging technologies continue to produce new data at an exponential rate, in real time and at an
individual level. There are millions of possible “observations” for individual consumers from multiple sources in
real time and they are easily accessible through trusted and secure processes.

Organisations focus on data analytics and insights as a core competency, share and access real time data across
organisations, and utilise commercial services to deliver value through leveraging the power of data. Artificial
intelligence and machine learning is common in both consumer and business digital services and precision
medicine plays a major role in health service delivery and performance. Individuals use data insights to better
manage their own health and wellbeing.

Improving equity of outcomes is a major focus for health service planning and performance.

Next steps
Ministry of Health to progress provision of the enablers identified in this strategy.

Organisations review their current level of maturity, practice and capability in data and information governance.
Health service providers take advantage of the Data and Information Governance Maturity Questionnaire
provided by the Department of Internal Affairs to determine its information governance programmes and
practices and build capability. Senior management develop tools and training to support the promotion of
information governance within their organisation

Health sector organisations that capture, store and share personal health information have a planned
programme of work to adhere to the Health Information Governance Guidelines.

Identify opportunities to apply enhanced data insights to digital health services especially those that are inter-
sectorial. Develop plans and programmes that support the collection of data and its transformation into
information for analysis.

Accessible, trusted information
Health information must be accessible when, where and in the format in which it is required, respecting the
needs and abilities of different users of this information, ensuring appropriate provision for people with
disabilities and accounting for different levels of technological and health literacy.

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Health information is valuable to a wide range of users for a wide range of purposes and in order for users to
have a high degree of trust in the information, there must be a level of confidence that it is complete, accurate
and available in a timely manner.

Currently
Health organisations typically have access to a consolidated set of clinical information created locally, or received
and stored within the organisation, supplemented by user access to information held in other organisations, or
accessed through shared multi-organisational, regional or national repositories. For example, all DHBs utilise a
clinical workstation tool to provide access to a patient record within their organisation and shared repositories of
diagnostic and other types of clinical information are commonly used.

However, the accessible data is incomplete (for example there remains a high proportion of information that is
not digital or that cannot be accessed outside of the specific system it is held in), is often not available in real
time, and is often in differing formats that impact its effectiveness and make it difficult to navigate. Consumer
generated and non-health data is rarely accessible. Almost no-one has a full picture so decisions are being made
with only partial views. Basic information is being collected over and over again to the frustration of consumers
who often bear the brunt of this lack of connectivity and access in the system.

There is a lack of national enablers such as architecture and standards and foundation digital health identity
services to support a trusted access to a national set of health information.

As a result, consumers and carers often experience challenges in contributing, accessing and engaging with
information to empower them to manage their health and wellness. For example:

         Obtaining and managing information across multiple sources and providers can be frustrating,
          erroneous, difficult, and sometimes impossible.
         Medical language often uses complex terminology and can be difficult to understand.
         The forms consumers are required to complete can often be confusing and consumers are asked for
          the same information multiple times.
         Accessible information on relevant services and entitlements is not always readily available.

Similarly health care providers could be better enabled in their decision making and care coordination with
improved access to consumer health information. In the absence of readily accessible information, providers
may:

         Face a decision to either go through a time-consuming process to collect health information.
         Make decisions on incomplete information.
         Rely on the recollection of consumers to inform decision making.
         Not provide appropriate care to an individual due to a lack of information such as communication
          preferences, support requirements, or cultural and spiritual needs.

Policy makers, service planners and researchers would benefit from more complete, timely and accurate health
data to support policy, investment, and service development planning decisions. While some information can be
drawn from national registries, more complete datasets on consumer health are not readily available and can be
costly to assemble. These gaps can prevent planners and researchers from leveraging this information to manage
population health or track effectiveness of service delivery.

The siloed health information landscape also constrains the ability for New Zealand to embrace innovative
models of care. Greater flexibility and agility is required to support ongoing innovation and continuous
improvement. Providing accessible health information to software developers and innovators (with appropriate
access and security controls) will lay the foundations for innovation and new models to emerge.

In the future
To support consumer-centred and more holistic models of care, information is being used in a more dynamic
way, meeting consumer expectations around how their information is accessed and used. Health data is made
accessible in a way that is meaningful for the people using it and information is presented in the right time, right
place, and right context.

National enablers such as architecture and standards and foundation digital health identity services are in place
to support a trusted access to a national set of health information.

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Permissions and restrictions around data access are being managed in a way that reassures consumers and
providers. Information is clinically accurate, but also reflects a consumer’s story and subjective experiences.
There is clarity and alignment around who should have access to what information and increased consumer
control over access to their own health information.

Consumers and carers can easily access the information they need to understand their health status and manage
their care across providers and settings – when and where they need it. There is a strong focus on making the
information engaging and actionable, empowering consumers and their carers to make informed decisions.

Different groups of people are able to access information in ways that are appropriate to their individual needs
and circumstances, taking into account factors such as their; age, gender and ethnicity; disabilities; language and
cultural considerations; technology and health literacy; expectations and beliefs; physical location and existing
conditions. Family, whānau and others can easily be granted access to relevant information with the permission
of the consumer and access can be provided on a short term basis under the control of the consumer to avoid
the issue of persistent access that is no longer appropriate at some future time. Consumers and carers also have
readily accessible information on relevant services and entitlements.

For health providers, information is readily available in a format that supports better care delivery and decision
making across different environments, care settings, and geographical locations. Improved usage of health data is
informing more consumer-centric, timely, safe, efficient, and effective care delivery. This includes information
that may be valuable in providing appropriate care to an individual, such as their communication preferences,
support requirements or cultural and spiritual needs. Better communication and transparency of health data is
supporting the coordination and integration of health services.

For policy makers, planners and researchers, improved access to trusted data is helping unlock insights that can
be used to better inform policy, investment planning and research. Consumer health information that is
complete, timely, valid, consistent and of high integrity is being used as a powerful tool in creating, tailoring and
coordinating health services to better meet consumer needs.

Innovations in personal devices and genomics are enabling access to many sources of valuable, personalised
information that assist in planning and implementing care. Accessible and trusted information is driving system
improvements and enabling the adoption and evolution of new models of care.

 The Consumer voice
 Current experience                                         Possible future experience
 The weather had been lousy so it wasn’t expected           The weather had been lousy so it wasn’t expected
 that Ian would wander over to the main café in the         that Ian would wander over to the main café in the
 retirement village for his usual afternoon tea catch-      retirement village for his usual afternoon tea catch-
 up.                                                        up.

  Nobody had heard or seen him for two days. The            The motion sensor in Ian’s townhouse showed on the
  nursing staff rang his townhouse but got no               computer screen in the main centre that Ian had
  response. A care assistant walked over to his home        moved between rooms within the last 2 hours, but
  and knocked on the door. The curtains were closed         the indication seemed to be that Ian had not moved
  even though it was mid-afternoon. She went back           from the kitchen to the lounge area. The fridge
  to the main centre and retrieved spare house keys         sensor showed the door had been opened around
  from the reception. This time she entered the             that time also. The nursing staff rang his townhouse
  house.                                                    but got no response. A care assistant walked over to
                                                            his home and knocked on the door. The curtains
  Ian was lying very still on the kitchen tiles. Checking   were closed even though it was mid-afternoon.
  for a pulse and realising that he was still alive the     Remote keyless access meant that on not getting a
  emergency call button was pushed which generated          response she was able to open the front door.
  the process to get help to Ian immediately.
                                                            Ian was lying very still on the kitchen tiles. Checking
                                                            from a pulse and realising that he was still alive the
                                                            emergency call button was pushed which generated
                                                            the process to get help to Ian immediately.

Next steps
Ministry of Health to progress provision of the enablers identified in this strategy.

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All organisations, whether commercial or health providers, should consider how they will provide consumers
with access to, and appropriate control over, their health information and greater transparency regarding its use.

Health sector organisations that capture, store and share personal health information have a planned program of
work to improve access to health information, implement frameworks to establish appropriate information
governance and sharing policies and processes, and adhere to the Health Information Governance Guidelines.

Identify opportunities to provide enhanced access to information and develop plans and programmes to deliver
them.

Access and connectivity
Access and connectivity is about linking every aspect of healthcare, ensuring professionals and individuals have
access to all the information they need when and where required. They are fundamental to enable technology-
enabled care, which involves the convergence of health technology, digital media and mobile devices.

Access and connectivity must consider all technology components that are required to provide access to a digital
service or information including network connectivity, internet access, affordability, user devices and the digital
services themselves.

Currently
Health consumers can access the portals and applications via web browsers or smartphones. However, there are
internet connectivity and affordability challenges in parts of New Zealand which preclude some health consumers
from actually being a digital consumer in the health ecosystem.

Access to health information for health consumers is generally limited to:

         Patient portals attached to the person’s General Practice Patient Management System
         Speciality health apps (e.g. Babylon Health).

While access is available to some people, the access is not universal and the information available may be
restricted (for example a patient portal may be limited to information held by the General Practice). People do
not have full access to their own health information nor do they have control over who else can access that
information. There is very limited ability for health consumers to add personal health information to their health
record (e.g. family histories; alternative medications; fitness data; etc.).

Health service providers have more access to health information via their local and regional electronic medical
records systems. However, this information is typically behind organisational firewalls without well-defined open
access for those who are not part of the organisation. Access to health information may be limited to access
from a secure desktop or organisational device and so may not be accessible while on the move.

Health information is also held in many silos meaning that health service providers must use multiple
applications/systems to access the information. The health service providers may not be aware of health
information held outside of their organisational boundaries (local and regional) as there is currently no
mechanisms in place to advertise where a health consumer’s health records are.

Generally, access to health information for service providers and health consumers is very application centric and
there are very few open application programming interfaces (APIs) available for application developers to use to
access the full range of data and services available across the NZ health sector.

Most health service providers have good connectivity to the Internet and to the Connected Health network (the
national private health network). Access to Connected Health is not available for non-health organisations or
consumers.

In the future
Connectivity (wired and wireless) coverage, capacity and performance is improved so there are fewer locations
within New Zealand that are without Internet connectivity. Affordability and other access barriers are being
addressed, especially where they can improve equity of health outcomes.

Access to health information for consumers is universal and people have full access to their own health
information. Consumers have choice over how, when, and where they access their health records and have

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confidence that their health record is current and complete. They have control over who else can access that
information. Consumers can add personal health information to their health record including from wearables
and other sensor devices.

Health service providers have access to health information from multiple sources wherever it is needed in an
appropriate format. Health records can be shared securely in a patient-focused approach.

Open and secure APIs are available to allow shared access of a consumer’s health data with a conformance
framework in place to “certify” these APIs adhere to security and privacy requirements and agreed national
standards. National foundation services enable a health service provider to know where all of the health
information for a patient exists across the NZ health ecosystem, though access to the data may not yet be
universal.

 The Consumer voice
 Current experience                                      Possible future experience
 “I live 45 minutes from Gisborne. When I was            “I live 45 minutes from Gisborne. When I was allowed
 allowed home after my Caesarean, my midwife             home after my Caesarean, my midwife came out just
 came out just once for the one-week check. The          once for the one week check. That was OK by me
 worst part of a Caesarean is that you’re not            because I knew I could access services by telehealth at
 permitted to drive for six weeks afterwards.”           any time. I had assurance that if I needed to see my
 “We don’t know whether our children are                 midwife she had the resources to visit me – an eCar
 disadvantaged because they have poorer access to        proves reliable and economic. It can be charged at the
 maternity and youth health services than urban          farm if necessary. The worst part of a Caesarean is that
 children. There is no data available.”                  you’re not permitted to drive for six weeks afterwards.
                                                         I have access to a new mum group via Facebook, and
     Experience provided by Rural Women NZ.              also by web link so I can meet people in similar
                                                         situations. There is a drone service that deliver those
                                                         necessities that my baby brain missed at the
                                                         supermarket – nappies, formula and snack for me.”
                                                         We are starting to understand the impact of rural living
                                                         on youth health services and maternity services
                                                         because we have defined what it means to be rural.
                                                         This data is allowing planners to change the model of
                                                         care for services provided to rural communities.”

Next steps
Ministry of Health to progress provision of the national interoperability and foundation service enablers
identified in this strategy. National interoperability and terminology services should be widely adopted by health
provider systems.

All agencies need to consider affordability and other access barriers to identify mitigating strategies especially
where they can improve equity of health outcomes. We need to influence government priorities in the rollout of
fast broadband or other appropriate solutions to improve connectivity of consumers or health service providers
who are experiencing difficulties.

All organisations, whether commercial or health providers, should consider how they will improve access to
health information in an appropriate way.

A proper analysis to be undertaken to identify the gaps in information access and a roadmap developed to fill
these gaps.

References
1.     Deloitte Centre for Health Solutions – Connected health. How digital technology is transforming health and
       social care.

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Enablers
Enablers are the resources, frameworks and guidelines that create the focus and cohesion needed to achieve our
objectives. The Ministry of Health will lead through the creation of the enablers and monitoring that participants
in the health sector are complying with their use and leveraging them effectively to ensure consistency and
effective delivery of the capabilities.

The enablers are critical to the success of the Strategy: without these the implementation of the Strategy risks
becoming fragmented and chaotic. While the Strategy adopts an eco-system rather than a directive approach to
implementing digital health services, compliance with the enablers is essential.

The Ministry is responsible for implementing the enablers. The next steps included for the enablers are more
specific than the capabilities and digital environment sections of the Strategy reflecting their criticality.

The Enablers are:

Interoperability
Interoperability is the ability for computer systems to exchange data and maintain the meaning of the data.
Interoperability is a core component of a strong cohesive digital ecosystem. Interoperability underpinned by
standards, security and privacy will enable information to be accessed by clinicians, patients and their carers
‘anywhere, any time and anyhow’.

Currently
In 2017 NZ health sector agencies, industry and individuals were encouraged to commit to the New Zealand
Health Interoperability principles, aligned to the Vision for Interoperability. These principles ensure that access
to and the exchange of data between organisations and software applications can be done safely, accurately and
as per the agreed standards. The principles are:

1.   Consumer Trust: Consumers can trust the quality, security and privacy of their health data. Consumers can
     access their own health data; create new data as part of their health record; and see who has accessed their
     data, what has been accessed, and when and why.
2.   No Blocking: We are custodians of health data and will make it available to others whenever consistent with
     the other principles and permitted by law. We will not unreasonably block or hinder access to the health
     data we hold.
3.   Data Sharing: Health data will be shared across the health and social care continuum with appropriate user
     authorisation, to support clinical decision-making and enable the provision of the right care, in the right
     place, at the right time and by the right people.
4.   Standards: We will implement agreed national interoperability standards and policies and adopt recognised
     practices related to health data including privacy, security, information governance and service
     management.
5.   Common Capabilities: We will utilise agreed national information common capabilities such as those
     providing identity, directory and health record services.

Many health data repositories do not support current modern interoperability standards, which makes it more
difficult to exchange health information. Information sharing between health service providers; either via
regional solutions or point-to-point has focused on process efficiency and little consideration has been given to
sharing information with health consumers.

In the future
Updated national interoperability reference architecture and standards meet today’s needs, and are flexible
enough to accommodate future needs. Solution suppliers and health providers develop and deploy their
solutions in accordance with the NZ interoperability principles. This enables the proactive exchange of health

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information amongst agencies. There is a common semantic model defined and used to ensure all exchanged
information is interpreted the same way, regardless of the system accessing the data.

An open application programming interface (API) led integration approach packages underlying integration and
orchestration services as easily discoverable and reusable building blocks. These building blocks are structured
across distinct data, process and experience layers, to achieve both greater organisational agility and greater
control.

Distributed integration is built on a lightweight technical foundation that is patterns-based, event-oriented, has
reusable connectors and is community sourced.

Trusted health information needs to be universally accessible. Where possible, we will have multiple trusted
databases / sources that all comply with the same standards, enabling a single view of the information.

Consumers and their advocates can utilise the interoperability frameworks, infrastructure and standards to
access their health information, confirm who has viewed their health records and share additional health
information with health providers.

Next steps (current to 2019)
2018

         Updated national interoperability reference architecture and standards published.
         All new investments must comply with the interoperability principles, reference architecture and
          standards.

2019

         There is a common semantic model defined and used to ensure all exchanged information is
          interpreted the same way, regardless of the system accessing the data.
          Solution suppliers and health providers develop and deploy their solutions in accordance with the NZ
          interoperability principles, reference architecture and standards roadmaps.
         Consumers and their advocates access their health information, confirm who has viewed their health
          records and share additional health information with health providers.

References
1.   HISO 10040: Health Information Exchange Standard
2.   NZ Government API Standard and Guidelines: https://www.ict.govt.nz/guidance-and-resources/standards-
     compliance/api-standard-and-guidelines/
3.   API-led connectivity for Australian Government

Architecture and standards
Architecture and standards enable technologies to work together and allow us to make changes easily and
efficiently. They allow sharing of information and drive action based on access to data, expressed in a common
way. The health systems will be constructed in such a manner as to allow components to be changed with
minimal impact to other components or systems.

Currently
Health information standards and information technology standards are published by the Ministry of Health. The
standards are a mix of endorsements for international standards and nationally developed specifications.
Standards are complemented by implementation guides and other reference documents.

DHBs are required to comply with HISO standards as a condition of the DHB Operational Policy Framework. ACC
and some other government entities voluntarily observe HISO standards. Standards adoption and use is highly
variable.

There are national architecture artefacts for:

         Connected Health
         Interoperability

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   Health Sector System Landscape
        Future State Health System IT Landscape

The Sector Architecture Group (SAG) is a group of architects working in the NZ health sector or working for
vendors supporting the NZ health sector. The SAG is responsible, via technical working groups, for the
development of appropriate IT related reference architectures, guidelines and corresponding standards.

Advice and guidance is provided to CIOs, projects, and investment planning teams in support of aligning
technology investment and direction against the business objectives. Currently each health agency does this
based on their own priorities.

In the future
Minimum viable standards are defined for key tasks, while allowing innovation, localisation or specialisation of
other components of the technology environment. Common architecture and standards ensure the consistent
exchange of information across disparate systems and diverse providers both within and outside the health
sector.

We have sector-wide adoption of all HISO-endorsed standards. HISO maintain and mandate fit-for-purpose
standards that meet the requirements of the digital health ecosystem architecture and extend to product
conformance testing, certification and adoption. Where suitable standards are already proven in other
jurisdictions we evaluate and endorse those standards wherever possible.

Standards are designed for conformance testing products and solutions, which can then be certified.
Procurement rules require health providers to select certified digital products and services from accredited
suppliers.

Standards are developed and implemented in shorter, iterative cycles, harnessing the collective efforts of the
architecture and standards community.

The reach of HISO standards is extended from DHBs to PHOs and NGOs.

Next steps (current to 2019)
2018

        Maintain and mandate fit-for-purpose standards including product conformance testing, certification
         and adoption.
        Create and refresh architecture and standards for
              o interoperability,
              o Network (Connected Health),
              o Security,
              o Digital identity and access management.
        All new investments must comply with the published architecture and standards.

2019

        Strengthen our relationships with key international standards organisations SNOMED International,
         HL7 International and GS1.
        Solution suppliers and health providers develop and deploy their solutions in accordance with
         published architecture and standards roadmaps.

References
1.   The Health Information Standards Organisation (HISO) is the expert advisory group on standards to the
     Ministry: http://www.health.govt.nz/about-ministry/leadership-ministry/expert-groups/health-information-
     standards-organisation
2.   HISO’s terms of reference: http://www.health.govt.nz/about-ministry/leadership-ministry/expert-
     groups/health-information-standards-organisation/terms-reference-health-information-standards-
     organisation
3.   HISO standards are approved by the Director-General and published by the Ministry:
     http://www.health.govt.nz/our-work/ehealth/digital-health-standards-and-governance/health-information-
     standards/approved-standards

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4.   Government Enterprise Architecture for New Zealand: https://www.ict.govt.nz/guidance-and-
     resources/architecture/

Security, privacy, trust
New Zealand healthcare consumers have a right to expect that the health sector will collectively maintain its digital
health services in a manner that ensures:

         ongoing integrity and confidentiality of health information; and
         the availability of health information to healthcare practitioners delivering services to them, when and
          where they need it

Maintaining trust and confidence in digital systems and data use is critical to the functioning of the health
ecosystem. A focus on effective privacy measures and a mature security culture combine to give both healthcare
consumers and practitioners the high degree of trust they require.

Currently
The demand for more and better information to support health care management and decision making continues
to grow in line with the use of digital technology and the sharing of health information electronically. Furthermore,
the explosion of technical innovation within the global healthcare sector will only increase this appetite for
consumer and practitioner-led digital health services.

Balanced against this dynamic technology environment, consumers and health providers continue to expect that
personal health information is; accurate; accessible when needed; shared when appropriate; and kept confidential
and secure. As more data is created, there is greater demand for access to information to support improvements
to services, raising concerns that this will impact the privacy of the consumer and the trust of the consumer / health
provider relationship.

In the New Zealand health sector, we have two HISO endorsed documents that are fundamental to assisting in the
achievement of these goals. These are the Health Information Security Framework (the HISF) and the Health
Information Governance Guidelines (the HIGG). In addition, DHBs required to comply with a series of security
assurance measures set by the Government Communications Security Bureau and the Government Chief Digital
office.

Both the HISF and HIGG are relatively new documents within the New Zealand health sector. Both have received
very positive comment from other sectors operating in New Zealand – notably the banking sector. A large part of
the success of these standards is based on the manner of their creation – each included very strong
representation from health care provider, consumer and technology sectors.

These documents collectively provide security guidance to the health sector. They cover all core security standards,
controls and provisions, as well as accounting for emerging technologies (such as cloud services and “Internet of
Things” devices). At the core of this guidance is the premise that each health sector entity should take a “best-
practice” risk-based approach when managing the privacy and security risk profile of its digital environment.

While uptake of the HISF within secondary care was initially slow, this has improved significantly. It is not clear
how widely adopted this is within other parts of the health sector but anecdotal evidence supports a view of
increasing impact in thinking. As the HIGG has recently been published, there has been insufficient time for the
health sector to adopt/implement although interest in and feedback on this document is increasing.

In the future
Adopting emerging digital health technologies is balanced against ensuring health providers and consumers are
confident that their personal health information is accurate, secured accessible to the right people.

An environment that delivers meaningful privacy and security assurances is achieved through a sector-based
approach, developed through a “top-down” leadership-led security culture that is supported by a series of “best-
practice’ security frameworks.

The HISF and HIGG account for new technologies as they emerge and empower health sector providers to
implement security measures using a localised and risk-based approach. Security and privacy education to agency
executive management and operational staff increases awareness, organisational capability and trust. It builds on

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