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Dr Martina Healy, Director of the ICU at Our Lady’s Children’s Hospital, Crumlin, said that “some of the different information systems don’t talk to each other”.
Dr Healy also said that investment is needed in people with IT skills that can use ‘big data’. “We have oceans and oceans of data,” said Dr Healy.
“But the question now is, what are we going to produce at the end of it? I think it is very hard to extract information. People think it must be easy: ‘We have been to the moon, surely I should be able to walk in and extract this data?’
“But it’s time-consuming; it’s very ‘clunky’. But if you have someone who can write software programmes, then they can extract it more rapidly. Somebody needs to be able to write the file in order to extract the data.”
Dr Healy was speaking at the APA conference on the role of ‘big data’ and the work of PICANet (Paediatric Intensive Care Audit Network).
PICANet is an international audit of paediatric intensive care that collects data on paediatric intensive care units (PICUs) in the UK and at two sites in Dublin, Our Lady’s Children’s Hospital, Crumlin, and Children’s University Hospital, Temple Street.
Dr Healy said that there must be more uniformity when it comes to data collection across the Irish health service.
“One of the problems in Ireland is that nobody has chosen one single information system. Because of that, getting them to talk to one another actually takes a lot of time and effort,” she said.
“It probably is a conversation that needs to take place. Not picking one system makes it very difficult for them all to talk to one another.”
At the same conference, Prof Neena Modi, President of the Royal College of Paediatrics and Child Health, said that in the UK, they “have regulatory approval to hold patient identifiers for very clearly-specified purposes”.
She was speaking on the collection of paediatric data in the UK.
“The children that first came into our database are now 10 years old. And in a few years’ time, they are going to be old enough to be able to make decisions for themselves about how their data should be stored and what their data should be used for.
“One of the things that we are starting to get some discussion and thoughts going on is, how do we actually do this?”
Prof Modi said that, at first, the UK regulatory authorities said data should be destroyed after a certain period of time.
“But this data is gold-dust… [the data] is meant to be a national resource in perpetuity going forward in time. So they [later] absolutely accepted that, and they are not now requiring us to destroy the data after 25 years.
“We are now raising within our steering group how can we actually [be] involving the young people themselves as they grow up. This data stands to benefit the life-long health of children. They should be integral in deciding how we are actually going to use the data.”