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Beyond open: making your data accessible

Sense about Science have recently set up a new website to help people make sense of children’s heart surgery data; Joanne Thomas and Emily Jesper from the charity explain why and how they made that data make sense.

Two percentages are shown being weighed against each other with the headline 'NO!''

A higher survival rate does not mean a better hospital. © PRAIS2 website project team 2016

At Sense about Science, we strongly believe that patients and families should be involved in how medical research is conducted and communicated. So when Dr Christina Pagel asked us to help codevelop the Understanding Children’s Heart Surgery Outcomes website, and include people who need this information in the project, we didn’t hesitate.

The website aims to help people make sense of children’s heart surgery survival data and see if hospitals are performing as expected. This information has been misinterpreted in the past and caused confusion and unnecessary anxiety. One of the things the site emphasizes is that it’s not possible to directly compare survival rates between hospitals because different hospitals treat different children and some children can have more complex medical problems than others.

We worked with a number of organisations on the project and our role was to run user-testing workshops with two key audiences Dr Pagel had identified: parents whose children have had, or will have, heart surgery, and people who might use the site professionally. That meant involving our established networks and building on them, including reaching out to parents through a children’s heart surgery charity: Children’s Heart Federation.

A graphic shows how data is fed into a formula to calculate a hospital's predicted survival range.

A hospital’s predicted range of survival depends on the children treated at that hospital. So a hospital treating children with more complex medical problems will have a lower predicted range. © PRAIS2 website project team 2016

Making it work by involving all the right people

We’re proud of the fact that every workshop participant could look at the Understanding Children’s Heart Surgery Outcomes today and spot at least three things directly influenced by their participation.

We cannot overstate how grateful we are to the families who volunteered to get involved in this project. It’s clearly an emotive, sensitive area but they wanted to build a resource that would help others in their position in the future.

It was great that the researchers were pushing for involvement from the people who would use the website and were so responsive to their feedback, careful to consider how to communicate sensitively and not afraid to ask participants about issues they were stuck on. For example, the researchers had been struggling to choose a term to replace the technical language “random variation” to describe the unavoidable unpredictability within survival statistics. But by working with the participants they could find a term that worked for everyone: “unforeseeable factors”. Another helpful moment was when participants noticed that some of the content spoke about death rather than survival, which the researchers had missed. There are often unforeseeable communication pitfalls in projects like this which is why it’s so important to get the audience involved early on.

It takes time, resources and support

Transforming difficult concepts into something that makes sense to a public audience takes time. It also requires careful planning and a schedule that allows a project to evolve.

In projects like this we carry out the important role of neutral facilitators, training and guiding everyone involved. We briefed the researchers on the value of listening, and why resisting the temptation to answer workshop participants’ questions too soon helps us to identify what’s difficult to understand. We also probed the workshop participants for feedback on all aspects of the site including content, language, navigation and appearance.

Support from funders to allow for the effort and time required to develop clear and understandable public resources is also vital. The funders, National Institute for Health Research, encouraged the researchers to be bold in how they involved different audiences by carrying out extensive user-testing.

A graphic shows a single hospital next to it's predicted survival range.

A hospital’s survival rate should only be compared to its own predicted range. It is not possible to directly compare survival rates between hospitals. © PRAIS2 website project team 2016

Your research needs you to trust the public

Seeing the Understanding Children’s Heart Surgery Outcomes become such a fantastic resource thanks to feedback from families and professionals is hugely rewarding, but it also reminds us of how much more we have to do. We need more researchers to get involved in communicating not only their research findings, but also the level of uncertainty within them, and explaining what the data can and can’t tell us. This requires more support for researchers to do meaningful public engagement, particularly when communicating difficult issues.

Sense about Science can help. If you are planning a public resource that shares data or research and would like to discuss your public engagement approach, let us know: Emily Jesper: enquiries@senseaboutscience.org

If you’d like to read more about the researchers’ experience, see their Guardian article: Making NHS data public is not the same as making it accessible – we can and should do better

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