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 required.

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 out 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 work.

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 domains.

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