Children's Collaborative News

Collective Collaboration - Program Update, July 2020

The Collaborative Program has reached major milestones over the past month, including the go-live of the Child Digital Health Record (CDHR) 0-4 years at Dubbo in western NSW and the first newborn to be digitally assessed at Blacktown Hospital.  The technical go-live of the Digital Pregnancy Health Record (DPHR) was completed in Brisbane, allowing us to test the data flowing between systems. 
Progress has also been made on the clinical data required for the CDHR’s 5-14 year old program, and we have set up an expert committee to help us with that project. It’s exciting to see the potential of a longitudinal health record for pregnant women and children, and we are making great progress to reach this goal.

COVID-19 continues to place demands on our public health systems and we want to thank all those clinicians who are helping us to test systems, enrolling patients in the trials, and working with us in the trial areas while still managing significant clinical demands. Also, sincere thanks to the patients who have agreed to help us out with testing in this early stage of the trials.

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Work Programs at a Glance

Learn more about our current work programs, activities and deliverables.

Maternal Program - Digital Pregnancy Health Record (DPHR)

The Digital Pregnancy Health Record (DPHR) team in Children’s Health Queensland, Queensland Health has been working hard to deliver the DPHR proof of concept. The exciting news is that the trial version is working, data from the pregnant woman’s antenatal check-up with the GP is flowing to the Child Data Hub and appears on the expectant mother’s app on her phone. Test data (rather than ‘live’ data) has been used at this stage, but several different clinical scenarios have been tested and are working as expected. 

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Children’s Program - Child’s Digital Health Record (CDHR) 0-4 years

The Child Digital Health Record 0-4 (CDHR 0-4) initiative being run out of NSW has reached a significant milestone by being able to enrol GPs at Dubbo (in western NSW) and Seven Hills (in western Sydney) to conduct health checks on children aged 0 – 4 years. Mothers with babies and infants of that age are trialling the consumer app when they are about to have their child health check assessments done. We will be surveying both GPs and mothers to gather feedback on the ease and use of the software and the app.  

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Child Digital Health Record (CDHR) 5-14 years

Extensive consumer and clinical surveys are out in the field, with people completing questionnaires as well as qualitative interviews. Led by the Northern Territory and Western Australia, the outcome of these surveys will determine what clinical information needs to be collected to maximise health outcomes in these formative years.  

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Privacy & Cyber Security - How we protect the privacy of data

We understand how important it is to ensure the privacy and security of children’s and mothers’ health information.

Despite the CDHR trial involving only a small group of users (both individuals and clinicians), we have put several measures in place that protect the privacy of the information in the system.

The trial is being run and managed by eHealth NSW, the digital health agency of NSW Health. All data captured during the trial will be stored and managed under the same strict security and privacy requirements that NSW Health applies to all of its systems.

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Next Steps on the Program

Each element of the program has made significant progress in proving the technology solutions and creating valuable underlining infrastructure and data standardisation that will enable the viability of longitudinal health records for children and young people. 

We now need to take the key learnings from each of the trials and develop an efficient solution that can easily scale up. The trials have started, and we want to ensure the technology can support large numbers of people using it, while still working on the data standardisation for the cohort of older children. We will continue to evaluate the clinical and consumer utility of these solutions during the trials to assess what will be required as we scale to a national solution.  

During the next 12 months, the program will be working with the Australian Digital Health Agency to understand the next steps for the technology and solution. The primary focus will be to assist with the transition to make this happen. We have also been asked to continue with the informatics, terminology and creation of the FHIR resources and profiles to assist with the national scaling, and to continue our partnership with the consumers and providers who are taking part in the current CDHR trials. We will keep you up to date with our progress.

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