Spotlight on bringing together all the data - harmonisation of the Baby Books and Pregnancy Cards

 

Did you know?

  • The information on a child’s physical and mental development that is collected and recorded in one state is not the same as in other states or territories?
  • When parents move between states, their record books have to change, and the data is often lost or not recorded correctly?
  • Antenatal records are also different state by state, or even between one health service and another in the same state?
  • The differences in the way questions are asked and information is recorded makes it challenging to get an accurate population health view of clinical data for all children in a state or the country?

The Data Harmonisation project sought to overcome these issues.

To create a national digital maternal and child health care record, we need to bring disparate pieces of clinical information into one central solution that is secure, consistent and as comprehensive as possible.

We know that one of the disadvantages of the current clinical records through pregnancy and early childhood is that records are captured across multiple paper and electronic systems, which can also vary across providers, and states and territories.

Uniting disparate data, the harmonisation project established a nationally agreed set of clinical information for use in the electronic versions of the baby books and pregnancy cards. 

Process

The harmonisation process included the review of eight state and territory Baby Books and Pregnancy Cards to find a way to rationalise and standardise this inconsistent clinical information.  

A framework for the national digital health records was developed based on key data that included how it was organised (ie, the hierarchy of the information) and quantified. It was then presented to the jurisdictional owners of the baby books and pregnancy cards, so they could agree on the standards and approach to the national digital health records.

Governance

The Collaborative has an extensive governance framework, with independent committees having jurisdiction over different parts of the program. The entire harmonisation process was governed by an expert committee established by the Health Services Principal Committee (HSPC), which is a subcommittee of the Australian Health Minister Advisory Council (AHMAC). The members of the harmonisation expert committees were the jurisdictional owners (or their representatives) of the paper records.

Informatics

The harmonisation expert committee agreed the clinical information to be contained in the digital health records. This information was then converted into technical specifications and used in the development of the Child Data Hub and Consumer Applications during the proof of concept.

Engagement

Broad engagement was undertaken with clinicians, consumers, researchers and peak bodies and colleges to understand the gaps that could be considered for inclusion in future development.

Achievements

The HSPC endorsed a common national data set for use in the national digital health records for pregnancy and young children – as outlined and recommended by the National Harmonisation Expert Committees. This was a major achievement as previous attempts have been unsuccessful.  

The Clinical Informatics Endorsement Committee, representing key peak bodies and colleges involved in the healthcare of children and antenatal care, also agreed that the clinical content is fit for purpose for their members. 

Reasons for success this time

The reasons we had a successful outcome include:

  • Developing a simplified data framework made it easy for committee members to decide and agree the most important clinical information for a national pregnancy and child health record.
  • Expert representation on the HSPC/AHMAC committees ensured decisions were credible and states and agencies were happy to follow their recommendations.
  • Partnering with the Australasian College of Health Informatics (ACHI), now the Australasian Institute of Digital Health (AIDH), which had existing relationships with key peak bodies and colleges, ensured the right clinical governance and guidance was sought.
  • Engaging CSIRO terminology specialists, to provide expertise on the use of national clinical terminology in the records (SNOMED and LOINC), ensured consistency between the states and territories. 

Value and Benefit

The agreement of national standards will help to ensure the solutions are nationally scalable and support exchange of key health information across care settings. This has been a key milestone towards creating a digital maternal and child health care record for the benefit of generations to come.


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