克里斯蒂娜·佩格尔博士认识到迫切需要patients, families and other interested users to have access to this key information, presented in a way that they could understand. She recruited a diverse team and launched a website-building project to do just this. The website,Understanding Children’s Heart Surgery Outcomes，，，，launched on 21英石June 2016.
Collaboration is key
At the heart of this project was collaboration. It highlighted the value of collaboration between different disciplines as well as the importance of involving different perspectives and experiences. To reflect this, Christina’s team included statistician Professor David Spiegelhalter, University of Cambridge, behavioural psychologist Dr Tim Rakow, KCL, web designer Mike Pearson and the two of our team at Sense about Science.
Our role was to recruit those who may have questions about children’s heart surgery statistics: parents and families of children who have had or will have heart surgery and other potential users such as policy and communications professionals, medical charities, Royal Colleges, NHS England and academic press.
对我们来说，最有意义的事情之一就是看到该项目对研究人员的影响。
Over the space of a year, we invited these groups to one of eight different user-testing workshops, where we tested and questioned participants on all aspects of the developing website including the content, language, layout and navigation. The feedback from these sessions was carefully captured and incorporated to advance the next stage of the website with a particular focus on making the data easier to understand.
早期研讨会上的参与者意见还使团队在网站内共同开发了两个动画，以解释有关如何监测医院绩效的一些更复杂的技术信息。这些动画在后来的研讨会中也经过了用户测试，并由早期参与者进行远程测试。我们收到的反馈是无价的，我们非常感谢那些花时间提供帮助的人。
Why it matters
One of the most rewarding things to see was the impact of this project on the researchers who all said how much they’d learnt and would take from their involvement. David Spiegelhalter noted, “This has been a humbling and invaluable experience.
我以为我对传达统计数据有所了解，但是坐在倾听努力理解概念的热情用户使我意识到自己的不足。”从科学的意义上讲，我们高度赞扬这些研究人员花费了巨大的努力和时间，以使他们的研究易于访问，并且该项目向我们强调了我们需要做更多的事情，以鼓励其他研究人员采用这种方法。
当然，最重要的是，有关儿童心脏手术的信息现在不仅仅是可用，也是无障碍to those that need and rely on this information – parents, medical charities, surgeons, policy professionals and others.
It makes you realize how each hospital varies as to which surgeries they will attempt.
Alex Smith, is a parent of a child with a heart condition, and attended one of the parent user-testing workshops. After seeing the finished website she said: “It feels overwhelming when given the devastating news that your child/baby has a condition that will affect their life.
要拥有一个清晰，易于理解的网站，可以提供有关英国所有医院的信息，可帮助您了解每个手术如何具有复杂性，因此可以改变该医院的结果。它使您意识到每个医院将尝试进行哪些手术。这是一个有用的信息来源，我们将密切注意确保我们正在接受手术时的医院表现良好。”
Get involved
If your research is in a controversial area which has been poorly communicated in the past and you are planning to develop a clear understandable public resource, involve the intended audiences early to co-produce it. We can provide support and advice, and may even be able to partner your project.
您可以看到有关我们公共参与伙伴关系的更多信息hereand if you’d like to discuss or get advice about a project, please contact Emily:ejesper@senseaboutscience.org
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