The power of one – multiplied!

CHF parents’ views have been at the heart of developments that today launch a parent-led tool opening up NHS children’s heart surgery data to families.

‘Understanding Children’s Heart Surgery Outcomes’ is a website that will help people make sense of published survival data about children’s heart surgery in the UK and Ireland.

This new tool informs 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 was developed by Christina Pagel from University College London 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 a risk adjustment method known as PRAiS (Partial Risk Adjustment in Surgery).

CHF parents participated in workshops that ensured the parental CHD voice was intrinsic to the site.

Alex Smith, mum to a wonderful daughter who was born with a congenital heart defect (CHD) will be interviewed today on BBC Radio 4 World At One.

Further information:

http://childrensheartsurgery.info/home