made by the Australian Digital Health Agency highlighted the first workshop
held by the National Children’s Digital Health Collaborative in order to share
the experiences and stories as well as gain a deeper understanding of their
roles as parents, carers and families in the Collaborative. Their thoughts and
ideas will help design the digital solutions and tools that will ultimately
impact their child’s development.
The National Children’s Digital Health
Collaborative held a very successful first workshop for consumer
representatives from across the nation. This is on line with its mission to
help make Australia the best place to be raised and to raise healthy children.
The Collaborative is exploring ways on how
digital health technology can improve the health and wellbeing of children and
young people living in Australia. Found at the heart of this Collaborative are
the patients, the carers and the families.
The first workshop gave the Collaborative’s
consumer representatives an opportunity to share their stories and experiences
and to gain a deeper understanding of their important role in the
Collaborative. The workshop was held in Sydney on 18 June 2018.
Ms Shantelle Rennie, from East Gosford in
NS, a first-time mother of 3-month old Harrison, said, “This is such an
exciting initiative, and I’m thrilled to be able to contribute my thoughts and
ideas to the design of digital solutions and tools that will ultimately impact
on my child’s development throughout his life.”
She added, “I am all for anything that
makes it easier to keep track of this important information about my child’s
health and wellbeing.”
More workshops will be held in the coming
months to on-board more consumer representatives. Four consumer representatives
are assigned to each of the Collaborative’s governance committee and advisory
This is essential as their involvement is
helping to ensure the voice of the consumer is central in the design of all of the
Collaborative’s digital health initiatives. Their voices alongside the voice of
clinicians and other key stakeholders make up the Collaborative.
The Collaborative consumer representatives role
entails to add value through representing and promoting consumer views, ideas,
suggestions and concerns on antenatal care and children and young people’s
health and wellbeing.
The Collaborative should also promote,
encourage and support consumer participation at all levels of the Collaborative.
The Collaborative must review and help to
identify consumer requirements for the Collaborative’s initiatives.
Also, the Collaborative must ensure that
the voice of consumers is included in the design of the Collaborative’s
initiatives, and supporting co-design between consumers and clinicians.
As of current, the Collaborative is as the
Discovery phase wherein they engage with clinicians, nurses and IT staff in the
pilot locations to learn about the current work practices, the people involved
and the systems used. They are being led by NSW Health in partnership with the
Australian Digital Health Agency in doing this.
The Child Digital Health Record, the first
initiative, which is being led by NSW Health in partnership with Victoria,
identified pilot sites and starting engagements in Blacktown, Mount Druitt,
Doonside, Dubbo and The Children’s Hospital at Westmead.
This will give Australian children the
option to have a comprehensive digital health record from the time they are
conceived, through those first critical years and adolescence, which is readily
accessible to parents and healthcare providers and ultimately for that
individual throughout their life.
The Digital Pregnancy Health Record, the
second initiative, which is being led by Queensland Health in partnership with
South Australia, will commence starting July at Brisbane’s Mater Hospital.
This will give pregnant women a digital
shared pregnancy plan that can be accessed by them and their healthcare
Uploading of school immunisation records to
the Australian Immunisation Register (AIR), the third initiative, which is
being led by the Australian Capital Territory in partnership with Tasmania, is
essential so that a full history of a young person’s vaccination from birth
through early childhood is stored securely in one place and accessible to them,
their parents, and their healthcare providers.
The National Digital Health Checks, the
fourth initiative, which is being led by the Northern Territory in partnership
with Western Australia, aims to digitise child health checks to help support
the early identification of a child’s health and wellbeing needs.
The implementation of the above four
initiatives will help to build a longitudinal child digital health record, the
fifth initiative. 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.
This will be a valuable national asset that,
following all required legalisation, policy and privacy protocols, 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.