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New parent-led website that opens up NHS children's heart surgery data to families launches

21 June 2016

CORU’s Christina Pagel has led an NIHR funded project to develop a new webtool that launches today that makes published NHS survival statistics accessible to everyone.  

Christina and her collaborators from the University of Cambridge, King’s College London and Sense about Science are calling for the end to an era of confusion and alarm about children's heart surgery statistics. The new website, Understanding Children’s Heart Surgery Outcomes will help people make sense of published survival data about children’s heart surgery in the UK and Ireland.

The website explains why 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 of survival, which is determined by the complexity of the procedures it undertakes, among other factors. The site also allows users to explore the published survival statistics in an intuitive and engaging way.

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

Christina and David are calling for other researchers, companies and government to make health statistics accessible to patients and families by making them understandable. Transparency without accessibility is not enough; improved understanding by decision makers, health care professionals, patients and families can prevent misuse, confusion and unfounded anxiety. 

Further information

This is an abbreviated version of the University of Cambridge press release. Click here for the full text.

Funding

This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 14/19/13)