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Parent-led tool opens up NHS children's heart surgery data to families

Researchers are calling for the end to an era of confusion and alarm about children's heart surgery statistics by launching an innovative communication tool that will help people make sense of published survival data about children’s heart surgery in the UK and Ireland.

The website, Understanding Children’s Heart Surgery Outcomes, which launches today, shows decision makers and parents that hospitals should not be ranked by their survival rates because hospitals treat different patients — high performing hospitals can have lower survival rates simply because they are taking on the most complex cases.

An individual hospital’s actual survival rate should only be compared to its own predicted range, which is determined by the complexity of the procedures it undertakes, among other factors. The website also sets out why if a hospital's survival rate is below its predicted range, it need not indicate alarm, but rather serves as a trigger for further investigation.

Dr Tim Rakow from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London studies how people make choices and how best to provide information to help people make decisions. He worked with Emily Blackshaw, also from the IoPPN, to run experiments that examined which types of explanation and graphics would aid understanding and reduce misconceptions about these complex survival data.

Dr Rakow said: ‘Collaboration has been key to the success of this project: working with the mathematicians and statisticians who generate these kind of risk models, and using what we know from psychology about people’s understanding of statistical concepts, the team has thought carefully about what needs to be presented, and how.

‘Then, having a highly skilled web developer and experienced science communications team from Sense About Science to refine and implement this – and with regular input from cardiologists, from the families of children with heart disease and the charities that support them – I believe we have developed something that should allow people to engage with what would otherwise be some fairly opaque information.’

The website was developed by Christina Pagel from University College London and Sir David Spiegelhalter from the University of Cambridge, in collaboration with Sense about Science and King’s. It uses a risk adjustment method known as PRAiS (Partial Risk Adjustment in Surgery).

‘This website draws a line under an era of poor risk communication of hospital surgery statistics,’ said Tracey Brown, director of Sense about Science. ‘In 2013 over-interpretation of faulty data resulted in temporary hospital closure of Leeds General Infirmary's paediatric heart unit. Parents and children were faced with all the additional stress, risks and costs of travelling further for operations, and for others the horrendous unnecessary guilt as they wondered if their child’s outcome would have been better at another unit. There could not be a stronger case for professionals and decision makers using the risk adjustment model and communicating it well.’

Each hospital that performs children’s heart surgery in the UK and Ireland has had its overall survival rates published by the National Congenital Heart Disease Audit (NCHDA)2 since 2013. The researchers used PRAiS to calculate a predicted range of survival for each specific hospital, taking into account the complexity of each individual child’s medical condition and surgery. No hospital will have exactly the same predicted range of survival as another hospital, because each hospital treated different children.

However, the report the NCHDA publishes is lengthy, hard to find and hard to understand without expert knowledge. Sense about Science ran user-testing workshops to involve the public, patients’ families and medical charities in co-designing the website with Pagel and Spiegelhalter, a first in this area.