Our initiatives

We, the Collaborative, are co-designing, implementing and evaluating a number of national proof of concept initiatives in support of children’s health and wellbeing:

Initiative 1: Child Data Hub & Foundations

What its it?

Our first initiative is designing, building and testing a next generation scalable, interoperability platform (the Child Data Hub) and standards to support the other initiatives by providing a more flexible and richer interoperability functionality set.

What does that mean?

The Child Data Hub forms the backbone of the Collaborative solution responsible for the management of a shared, longitudinal digital health record for children and pregnant women. The nine foundational components required to support all the initiatives, are:

  • Child Data Hub
  • Digital Child Health API(s) – designed and built by the Collaborative using FHIR
  • National Interoperability API(s) – existing
  • Other National Infrastructure (i.e. Healthcare Identifiers (HI) Service, My Health Record)
  • Jurisdictional Systems (Hospitals, Community Health, etc) – information recorded in existing jurisdictional health systems is sent to the Child Data Hub
  • Other Provider Systems (i.e. General Practice, Private Specialists, Private Hospitals) – information recorded in existing health systems (e.g. a GP’s software) is sent to the Child Data Hub
  • Consumer Apps
  • Health Provider Viewer (future development) – to allow a healthcare provider to view a longitudinal view of information
  • Governance, Operation and Support

All these components will facilitate interoperability between different systems to support the sharing of a longitudinal record of child health and development and antenatal information. The graphic below illustrates how those systems work together and eventually feed all data into the Child Data Hub, which will build the foundation for all following initiatives. 

 

Who is involved?

All Jurisdictions and Agencies (the Child Data Hub is being designed and built by NSW Health and will hosted under NSW Health Legislation for the trial. It will transition to National Infrastructure and Commonwealth Legislation for national roll-out)


Initiative 2: Child Digital Health Record (Baby Books)

What is it?

A child’s important health and development information is currently captured in different paper books across Australia (for example, the Blue Book in NSW or the Red Book in QLD). A child’s parent or carer must carry this vital information by hand between their various healthcare appointments. Often these books may be forgotten or misplaced, which makes it difficult for healthcare providers to access the information they need to provide safe, high quality care at the time of presentation.

Now imagine a solution that will harmonise (bring together) health information from all states and territories baby books into one, single, secure, national and more comprehensive digital health record!

This is the Child Digital Health Record (CDHR), a user-friendly and easy-to-use solution designed to meet the needs of your family, your children and your healthcare providers. For healthcare providers, the record will be displayed within your existing clinical systems.


Initiative 3: Digital Pregnancy Health Record (Antenatal Record)

What is it?

Currently, a woman’s pregnancy records are captured across multiple paper and electronic systems, which can also vary across providers, and states and territories in Australia.

As a result, important health information is often double-entered into both paper records and digital systems, making it challenging for women and their healthcare providers to easily access relevant and complete health information about her pregnancy.

Now imagine a solution that will integrate multiple paper and electronic systems with one secure digital record of a woman’s antenatal journey that is designed to capture and share health information between a pregnant woman and her healthcare providers.

The Digital Pregnancy Health Record (DPHR) will support integrated care by giving pregnant women a convenient and easily accessible way to store and share their pregnancy health information with their healthcare providers anytime, anywhere in Australia.

What is the objective of the initiative?

Over time the Digital Pregnancy Health Record (DPHR) will replace multiple paper with a secure digital record of a woman’s antenatal journey. It is designed to capture and share health information between a pregnant woman and her healthcare providers. The initiative will support integrated care by giving pregnant women a convenient and easily accessible way to store and share their pregnancy health information with their healthcare providers anytime, anywhere in Australia. The initiative will demonstrate the ability to digitise elements of the nationally harmonised antenatal record.

How will it benefit you?

Once released, the DPHR can:

  • Share important pregnancy health information between a pregnant woman and her healthcare providers
  • Capture and share information currently held in siloed paper and electronic systems in an easy-to-use digital format
  • Help reduce the risks associated with misplaced or double-entered data
  • Support pregnant women to move between healthcare organisations more easily

Who is involved?

  • All Jurisdictions and Agencies (led by QLD in partnership with SA)
  • Trial sites in QLD at Mater Mothers (South Brisbane), and the Cairns & Hinterland Hospital and Health Service (incl. surrounding GPs and other community health providers)

Initiative 4: Child Digital Health Record 5 to 14 years

What is it?

While health checks and parent-held health records are standard practice nationally for children from birth to 4 years old, there is currently not a consistent or national approach in place for children over the age of 5 years. Currently, a child’s health data often stays within the software of their different healthcare providers, which can make it difficult for parents, carers and other providers to access this crucial information when they need it.

Through the CDHR we will have created a national, digital health record for a child’s information from 0 - 4 years. Building on this foundation, the Child Digital Health Record 5 - 14 (CDHR 5 to 14 Years) aims to co-design a set of high-value clinical data elements to be routinely collected for Australian children aged between 5 and 14 years. As a result, it can offer a comprehensive record of a child’s healthcare journey from birth to the age of 14.

How will it benefit you?

The CDHR (5 to 14 Years) will impact your family and community by:

  • Offering you access to and better control over your child’s health information
  • Empowering you to be a partner in your child’s care alongside health providers
  • Providing valuable support in understanding and managing your child’s healthcare journey.

Who is involved?

All Jurisdictions and Agencies (led by NT in partnership with WA)


Initiative 5: Research

What is it?

Looking into the future, research will continue to underpin everything we do and, as a result, contribute to public health (studies) of the broader community.

Our initiatives will help build a longitudinal child digital health record for all Australian children and young people, which will be rigorously evaluated by researchers to help build a business case for national rollout.

The information recorded and stored in this record will help to build a valuable national repository of child health data that will ultimately enable critical research into the developmental, health and wellbeing needs of children and young people across Australia. It will help to support evidence-based policies and programs to improve health outcomes for children and young people.

We are committed to co-designing systems that help improve both the quality of, and access to children and young person’s health data for the research community.

Who is involved?

All Jurisdictions and Agencies

See who our partners are

Home page