Understanding Children's Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website.
Risk-adjusted survival statistics after children's heart surgery are published annually in the United Kingdom. Interpreting these statistics is difficult, and better resources about how to interpret survival data are needed. Here we describe how a multidisciplinary team of mathematicians, psychologists, and a charity worked with parents of heart surgery children and other users to codevelop online resources to present survival outcomes. Early and ongoing involvement of users was crucial and considerably changed the content, scope, and look of the website, and the formal psychology experiments provided deeper insight. The website http://childrensheartsurgery.info/ was launched in June 2016 to very positive reviews.
Clinical Operational Research Unit, University College London, London, United Kingdom. Electronic address: c.pagel@ucl.ac.uk.
Christina
C
Pagel
Sense About Science, London, United Kingdom.
Emily
E
Jesper
Sense About Science, London, United Kingdom.
Joanne
J
Thomas
Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
Emily
E
Blackshaw
Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
Tim
T
Rakow
Statistical Laboratory, Centre for Mathematical Sciences, University of Cambridge, Cambridge, United Kingdom.
Mike
M
Pearson
Statistical Laboratory, Centre for Mathematical Sciences, University of Cambridge, Cambridge, United Kingdom.
David
D
Spiegelhalter
D006348:Cardiac Surgical Procedures / Q000706:statistics & numerical data*; D002648:Child; D006801:Humans; D020407:Internet; D012042:Registries