Children’s heart surgery data – making it available and accessible

Children's heart surgery data is without doubt an emotive and difficult subject area. It's also an area that has had its share of misrepresentation, confusion and sensationalist media attention. Dr Christina Pagel, a researcher in this area, wants this to change. She develops the formula used to monitor hospitals that carry out children's heart surgery, but realised her role as a scientist goes beyond this formula.

Dr Christina Pagel recognized the urgent need for 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 21st 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.

One of the most rewarding things for us was to see the impact of this project on the researchers.

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.

Participant input in the early workshops also led the team to co-develop two animations within the site to explain some of the more complex technical information about how hospital performance is monitored. These animations were also user-tested in the later workshops, as well as remotely by earlier participants. The feedback we received was invaluable and we are extremely grateful to those who gave their time to help.

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.

I thought I knew something about communicating statistics, but sitting listening to enthusiastic users struggling to understand concepts made me realize my inadequacy.” At Sense about Science, we highly commend these researchers for the great effort and time they spent listening, to make their research accessible, and this project has highlighted to us how much more we need to do to encourage other researchers to adopt this approach.

Of course, most importantly, information about children’s heart surgery is now more than just available, it is also accessible 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.

To have a clear, easy to understand, website that gives information about all hospitals in the UK helps you understand how each surgery has its complexities and therefore can alter the outcomes for that hospital. It makes you realise how each hospital varies as to which surgeries they will attempt. It is a useful source of information that we will keep an eye on to make sure the hospital we are under is still performing well when we have surgery.”

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.

 You can see more information about our public engagement partnerships here and if you’d like to discuss or get advice about a project, please contact Emily: ejesper@senseaboutscience.org

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