This appeared during the week:
Big data project offers ‘better return’ on health services
- The Australian
- 12:00AM November 30, 2017
In a world first, medical data from an entire generation of Victorian babies will be pooled to fast-track research into diseases like autism, depression and obesity.
Parents of all children born in the state in 2020 and 2021 will be invited to join the “Gen V” project and help transform Victoria into a “living laboratory”.
The initiative’s architects say it will accumulate medical information at the scale needed to tackle big health issues, allowing researchers to analyse existing data rather than being forced to recruit medical trial participants from scratch.
Up to 160,000 Victorian children will be included in the project, which will aim to keep imposts on parents to a minimum. “It’s basically business as usual for them,” said project leader Melissa Wake of the Murdoch Childrens Research Institute.
“It’s about working through existing services and data as much as possible, with some judicious additional data collected very infrequently, to get a better return on the huge investment that goes into services in Australia. This is the first time this kind of data has been brought together at a statewide level anywhere in the world.”
She said researchers examining the obesity epidemic, for example, were hamstrung in investigating its root causes. “The only way to do that at the moment is to go out and recruit a sample, usually quite small, measure them and try to reach some conclusions.
“Our children are actually weighed and measured a lot. Using existing data we could build up a picture of how children are growing, and find places where they have better body mass indexes, so we could test new ways to tackle the big issues that really haven’t shifted at all over the last 30 years.”
More here:
There is also coverage here:
Planning to have a baby in 2020? Here's the question you should prepare for
Aisha Dow
Published: November 30 2017 - 12:15AM
The parents of all Victorian babies born in 2020 and 2021 will be asked to hand over their child's health records, as part of an ambitious research project aimed at solving the nation's pressing health problems.
Detailed information about more than 160,000 children is set to be stored in an enormous "data repository" through the Generation Victoria (Gen V) program unveiled on Thursday.
The repository could keep information such as health checks, weight and blood test results as well as school records including whether children arrive at class hungry, if they are left or right-handed, if they can hold a pen and if they are able to read.
Most of the information is already kept by different organisations or authorities, but has no central source.
"It will be one of the largest research projects in children's health in the world," said Gen V project lead Professor Melissa Wake.
"There is a lot of research waste. What Gen V is trying to do is make research much more efficient by creating a pool of information."
Gen V will be an opt-in program. Professor Wake said parents would most likely be asked if they are willing to participate soon after their baby is born, at the same time they are offered hearing screening.
She said the information would be de-identified to ensure privacy, with researchers and other groups able to apply to access the information.
With fears the current generation of children could be the first to be less healthy than their parents, it is hoped that the project will supercharge research into pressing health problems and childhood challenges including obesity, autism, asthma and depression.
"Despite a lot of gains in a lot of conditions, some of the big-ticket items we are just not making progress with," Professor Wake said.
Lots more here:
This is the right way to go about things:
1. Consent up front from patients and parents (Full Opt In). (And I am sure ethics approval etc.)
2. Purpose designed data-repository (Costing $20+ million funded by philanthropy which can provide a lot more if needed and results are being seen)
3. Recognised cross disciplinary expert groups driving the research.
4. State Government support.
5. Defined clinical targets that have provided.
6. Re-use of data of known quality collected prospectively.
It seems to me this is a ‘good thing’ indeed and I wish the research every success.
David.
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