Pagel, C;
Jesper, E;
Thomas, J;
Blackshaw, E;
Rakow, T;
Pearson, M;
Spiegelhalter, D;
(2017)
Understanding Children's Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website.
The Annals of Thoracic Surgery
, 104
(1)
pp. 342-352.
10.1016/j.athoracsur.2016.11.080.
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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.
Type: | Article |
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Title: | Understanding Children's Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website |
Location: | Netherlands |
Open access status: | An open access version is available from UCL Discovery |
DOI: | 10.1016/j.athoracsur.2016.11.080 |
Publisher version: | http://doi.org/10.1016/j.athoracsur.2016.11.080 |
Language: | English |
Additional information: | Copyright © The Authors. Published by Elsevier Inc. on behalf of The Society of Thoracic Surgeons. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). |
UCL classification: | UCL UCL > Provost and Vice Provost Offices > UCL BEAMS UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Mathematics UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Mathematics > Clinical Operational Research Unit |
URI: | https://discovery-pp.ucl.ac.uk/id/eprint/1546739 |
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