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; David J Spiegelhalter

doi:10.1016/j.athoracsur.2016.11.080

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, David J Spiegelhalter

Research output: Contribution to journal › Article › peer-review

Abstract

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.

Original language	Undefined
Journal	The Annals of Thoracic Surgery
DOIs	https://doi.org/10.1016/j.athoracsur.2016.11.080
Publication status	Published - 19 Mar 2017

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10.1016/j.athoracsur.2016.11.080

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AU - Pagel, Christina

AU - Jesper, Emily

AU - Thomas, Joanne

AU - Blackshaw, Emily

AU - Rakow, Tim

AU - Pearson, Mike

AU - Spiegelhalter, David J

PY - 2017/3/19

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AB - 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.

UR - https://kclpure.kcl.ac.uk/portal/en/publications/understanding-childrens-heart-surgery-data-a-crossdisciplinary-approach-to-codevelop-a-website(8976cd06-6f88-4ffb-9eb7-8cc4e1cf8752).html

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M3 - Article

JO - The Annals of Thoracic Surgery

JF - The Annals of Thoracic Surgery

ER -

Understanding Children’s Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website

Abstract

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