Article from 2022 Impact of Giving Annual Report
When a child or young person is seen at the RCH, they have their health information entered into the hospital’s Electronic Medical Record system (EMR). This may include blood testing, medical imaging, genetic and diagnostic testing, whether they are involved in a research project or clinical trial, and if they use a health app or a wearable medical device, to name a few examples. With thousands of patients seen weekly at the busy RCH, to say there is a huge amount of data collected is an understatement.
Thanks to a generous five year grant provided by the RCH Foundation, the Melbourne Children’s Campus is utilising this data and information to improve all aspects of patient care, operations, education and research through the Centre for Health Analytics. The first of its kind in Australia, the Centre for Health Analytics is a partnership between the RCH, the Murdoch Children’s Research Institute (MCRI) and the University of Melbourne.
Health analytics is the digital meeting place of health care, information technology and science. At the right time, the right data presented in the right way can inform decisions and impact the prevention, treatment, and cure of conditions.
Kate Lucas, the Director of the Centre for Health Analytics, said the Centre, which launched in June 2021, has addressed a gap in data analytics.
“We take in a lot of data about clinical care and through medical and clinical research, but prior to the establishment of the Centre we had all this data and we were not doing enough with it,” Kate said.
“There was also a gap in data technology; using the EMR a clinician can see information on one patient, but it’s hard to see all the patients they’ve seen that year or search to see how many of their patients required follow up for a specific reason – the Centre has already addressed these shortcomings.”
The Centre boasts a team of over 40, comprising data analysts, data researchers, informatics researchers and support staff. Together they are working to improve the technology to access data, and upskilling staff, clinicians and researchers across the campus on how to better utilise data. Even though the Centre is in its infancy, the implications have already been far-reaching, improving efficiency, safety and child health outcomes.
In one example, by dissecting existing hospital data, kidney clinicians were able to spot the early signs of genetic kidney disease and suggest a genomic test. This test enables a speedy, cost-effective diagnosis for patients, and has a major impact on their health in the long term.
“By utilising data and going back through the EMR, clinicians flagged all the children who provided a urine sample with blood present whilst at the RCH. There can be blood in the urine for many reasons and often it’s nothing to worry about but kidney clinicians recognised that blood could be an early warning sign for Alport syndrome, a type of genetic kidney disease,” Kate said.
Using the data available they went back through and identified the children at the highest risk – and collected a repeat urine sample. From the 120 responses received, eight children were found to have persistent blood in their urine and were then offered genetic counselling and a genetic test to see if they had Alport syndrome. People with Alport syndrome experience progressive loss of kidney function, and often experience kidney failure by the time they reach 40 years old.
“From this genetic testing, clinicians have already identified a child that has Alport syndrome, which can be easily treated with medication. This means 10 to 15 years more of kidney function thanks to early detection and that their families can be tested,” Kate said.
Screening and simplified testing will benefit patients like Archer, who last year was diagnosed with Alport syndrome following an arduous medical process to find a diagnosis. Despite the four year search for answers, Archer now has a better quality of life thanks to early intervention and his diagnosis means his wider family can be tested to see if they are also impacted or carriers of the affected gene.
For many clinical trials and research projects, the creation of the Centre for Health Analytics has greatly improved efficiency. As part of the Centre’s embedded trials, the hospital is the first in Australia to build clinical trials within the EMR, which can be integrated with routine care. For example, when a clinician is providing care to a child, if the patient meets the criteria for a clinical trial, a pop up will appear that alerts them the patient is eligible for that trial. For researchers, the ability to access data and see it quickly en masse rather than looking at patients or lab results one at a time has already greatly improved efficiency and the cost effectiveness of research.
Philanthropic funding from the RCH Foundation has ensured the hospital continues to innovate and lead the way in the adoption of big data technologies and systems for healthcare in Australia.
“We’re incredibly grateful to our donors and to the RCH Foundation for seeing the potential of data to improve child and adolescent health. Using data in a safe and secure way to deliver better care takes time and effort, and through the funding that the Centre has received, we’ve started building those vital foundations. This kind of work takes long term vision and commitment, and would not be possible without the ongoing support of our donors and commitment from the RCH Foundation,” Kate said.
While the Centre has already had an impact in many aspects of patient care, safety, education and research, Kate says the full potential of the Centre is still to be realised.
“The Centre is only just starting on the data journey; we are leading Australia in this space but it’s still just the beginning and that’s very exciting. We have really new, really powerful data techniques that in five and ten years’ time will see amazing benefits for patients. We’ll be able to use our data to predict health problems and intervene early, helping kids live healthy and fulfilling lives. We’ll use our data to find new trends and patterns, build knowledge and become more and more proactive so we can keep children out of hospital.