The world is on the cusp of a digital health transformation, and integrated healthcare data is already enhancing the way people access care, tackle disease and respond to treatments.
New technology is allowing healthcare professionals to begin personalising medicines, as well as informing much more sophisticated research. As a result, we are beginning to better understand how and why people respond differently to the same treatment or drug.
But there is the potential to do so much more.
Karen Lamb is a senior team member at GenV (Generation Victoria), a project led by the Murdoch Children’s Research Institute (MCRI) in the Australian city of Melbourne.
GenV plans to approach all babies born in the state of Victoria in 2020, and follow them for two years, asking their parents’ consent to take part throughout the baby’s childhood. It will put the state’s medical research at the forefront of this data revolution.
Lamb is a biostatistician, brought in to make sure the data from this world-first project is as accessible and useful for researchers as possible.
She says that the project is unique in the way it focusses on an entire population of newborns within a state or territory, rather than just a sample – which makes it one of the most ambitious children’s projects ever attempted.
The team is looking to amalgamate data that is already collected and stored separately during routine check-ups, to inform future research. For interested families, they additional genetic information from the children and their parents.
“Each person’s information is unique, but combine data from a large population and you can unravel valuable trends and patterns,” Lamb explains.
“By improving, combining and unifying the data, researchers will be able to do things like identify markers for disease; trends in obesity and cardiovascular disease; devise ways to diagnose and treat allergies; and provide a foundation for better integrated health data across Victoria.”
Melissa Wake, director of GenV, says that by 2035 the project’s mission is to have solved complex health, development and wellbeing issues for children now, and the adults they will become.
Wake says to create a study of this scale, the team looked at examples from overseas, such as the UK Biobank, the Norwegian Mother and Child Cohort Study, and the Japan Environment and Children’s Study.
“I can ensure that the data is protected, de-identified, and stored in a way that is easily accessible and relevant for researchers,” she says.
“This means scientists will be spending less time collecting, cleaning and refining data sets, and more time working on treatments for some of the world’s most challenging diseases. In addition, families will know that their data are not only safe and private, but helping other children in the future.”
Karen Lamb is among 30 Superstars of STEM featured in this weekly series prepared by Science & Technology Australia (STA) – to learn more about the program, visit the STA website.
Dion Pretorius is Communications and Policy Manager at Science & Technology Australia.
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