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Review
Understanding Children's Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website.
- Christina Pagel, Emily Jesper, Joanne Thomas, Emily Blackshaw, Tim Rakow, Mike Pearson, and David Spiegelhalter.
- Clinical Operational Research Unit, University College London, London, United Kingdom. Electronic address: c.pagel@ucl.ac.uk.
- Ann. Thorac. Surg. 2017 Jul 1; 104 (1): 342-352.
AbstractRisk-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.Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.
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