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New initiative aims to enable establishment of lifelong digital health records for all Australian children

New initiative aims to enable establishment of lifelong digital health records for all Australian children

The Australian Digital Health Agency
(ADHA) has entered into a partnership
with eHealth NSW, the lead agency in the New South Wales
(NSW) Government for ICT-led healthcare and the Sydney Children’s Hospitals Network
(SCHN) to establish the National Children’s
Digital Health Collaborative.

The Collaborative is one of the first initiatives of
Australia’s National Digital Health Strategy – Safe, Seamless, and Secure, released
in August last year. The initiatives identified in the Collaborative align with
the National Digital Health Strategy’s models of care to improve accessibility,
quality, safety, and efficiency in improving child health.

Currently, records on a child’s health and development are captured
in multiple paper and digital systems, making them difficult to access as and when

The Collaborative is exploring how every child in Australia
can have the option of a comprehensive digital health record from the time they
are conceived, through the critical first years and adolescence. The record will
be readily accessible by parents and healthcare providers and ultimately for
that individual throughout their life. This initiative will test how
information can be captured not only through a child’s interaction with the
health system and other services such as school immunisation programs, but also
through their mother’s relevant interactions during her pregnancy.

SCHN Chief Executive Dr Michael Brydon said, “This will be
of enormous value – not only to healthcare professionals providing care to
those children – but to the children themselves as they become young adults and
start making decisions about their own health and care.

The Collaborative will also test the ways in which parents,
carers and healthcare providers want to access this information, including
through systems such as My
Health Record
, which is being rolled
nationally under an opt-out model. This work will then provide a base
of evidence and experience with a view to rolling out solutions nationally.

This is also intended as a platform for innovation for
industry to develop new tools and digital health services.

The Collaborative comprises around 400 clinicians,
consumers, IT experts, and researchers from across Australia and is aimed at
making a positive impact on children’s health and wellbeing. The Collaborative
comprises a wide variety of experts, including clinicians, consumers, governments,
researchers, providers and industry representatives, who will co-design and
test a way for parents and healthcare providers to easily access standardised
information on a child’s health and development.

The CEO of ADHA, Mr Tim Kelsey, said the Collaborative is a
momentous opportunity to make a lasting difference to the long-term health of
all young Australians, given that many predictors of adult disease have their
origins in childhood.

“This work will enable the establishment of lifetime digital
health records for all Australian children, wherever they live or present for
treatment,” Mr Kelsey said.

eHealth NSW Chief Executive, Dr Zoran Bolevich, said the aim
is to create a holistic digital view of a child’s health for families who
choose to have one.

The National Digital Health Strategy outlines a test bed for
children’s health that will examine how every child in Australia can have
access to a comprehensive digital health record. According to the press release,
in October 2017 ADHA’s Board approved funding to design, build, and evaluate
proofs of concept for five nationally focused initiatives directed towards
achieving this objective.

The first is a
National Child Digital Health Record
. Currently a child’s health and
development information is captured in hard copy baby books, such as the Red
Book in Queensland, Blue Book in NSW and Green Book in Victoria. These books
must be carried between healthcare appointments by a child’s parents and
carers, and are often forgotten or misplaced. This initiative aims to capture
this information digitally for easy access by parents, families and healthcare
providers. New South Wales and Victoria are leading this work.

The second initiative
is the upload of school immunisation records to the Australian Immunisation
Register (AIR)
. The AIR does not currently capture and record all of
the vaccinations adolescents receive through the school immunisation programs.
Adolescents may be given a paper record of a vaccine they received in school,
which is often lost or misplaced, resulting in potentially missed vaccinations
or duplicate vaccinations being given.

This initiative will support the upload of school
vaccination records to the AIR so that a full history of a young person’s
vaccinations from birth through to early adulthood is stored securely in one
place. The Australian Capital Territory and Tasmania are leading this work.

Currently, women’s antenatal or pregnancy records are mostly
captured on paper. These handwritten records are often difficult to read
and providers need to double-enter the handwritten information into separate
paper and digital systems, and the information is often not brought to hospital
when the woman goes into labour.  So, the third project, National Digital
Pregnancy Health Record
, will develop a digital shared care
pregnancy plan accessible by pregnant women and their healthcare providers.
Queensland and South Australia are leading this work.

Child health checks such as the Medicare Health Assessment
for Aboriginal and/or Torres Strait Islander People are conducted by GPs and
Aboriginal Medical Services (AMS). However, the information often stays within
the GP or AMS software and is not shared electronically with other care
providers, limiting the opportunities for early detection, diagnosis, and
intervention for common and treatable conditions by a child’s wider care team.
It also reduces the ability to offer integrated care and to better identify any
services a child may require. The National
Digital Child Health Checks
initiative will digitise child health
checks to help support the early identification of a child’s health and
wellbeing needs. Northern Territory and Western Australia are leading this

The implementation of the above four initiatives will help
to build a longitudinal child digital health record. This will create a
national repository of high quality, commonly understood, and structured child
development information contributed by young people, their families and carers,
primary care and jurisdictions.

Following all required legalisation, policy and privacy
protocols, this could help researchers and policy-makers better understand
children’s health and wellbeing needs, and ensure that policies and programs
aimed at improving health outcomes for children and young people are
evidence-based and informed by robust health research and data systems.

Some of the identified research areas this information
could support include: 1) Quality Use of Medicines in pregnant women and
children; 2) Prenatal and early childhood influences into obesity’s developmental
origins and 3) Research into early childhood development across developmental


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