Researchers behind leading children’s heart surgery survival website launch new patient and public involvement guide

RESEARCHERS from a flagship NIHR-funded study helping parents understand survival data about children’s heart surgery have launched a new best practice guide for involving patients and the public in research.

The PRAIS 2 study team had previously been commended for their work in developing the Understanding Children’s Heart Surgery Outcomes website to better inform people how the NHS monitors children’s heart surgery.

The study built on work previously funded by the NIHR to develop a model to estimate the risk of death for children undergoing surgery – taking into account each child’s heart condition, the type of operation, their age, weight and whether they had other health problems.

The Understanding Children’s Heart Surgery Outcomes website was developed with the support of independent campaign charity Sense about Science. Patients and the public were invited to workshops to help co-develop the website’s content, layout and data presentation to ensure they could best understand a complex and sensitive topic.

Now Sense about Science and the researchers have launched ‘Public Engagement: a Practical Guide’ to help other researchers involve the public in communicating findings from the earliest stages of their projects and on the most challenging of subjects. The document – which was funded as part of the study – features a five-step guide used by the team on their project with advice ranging from initial scoping of the subject to planning and user-testing materials to present findings in a clear and accessible way.

The new resource aims to provide valuable support to help researchers planning their next grant proposals and projects think ahead about how their work could have an impact.

The NIHR’s vision to improve the health and wealth of the nation through research involves increasing opportunities for patients and the public to participate in and benefit from research.

Dr Christina Pagel, PRAIS 2 Chief Investigator and Associate Professor in Operational Research, University College London, said: “I am so glad that NIHR gave Sense about Science the opportunity to distil their expertise into this guide to help other researchers.

“Sense about Science led me through these steps for developing our website communicating how the NHS monitors children’s heart surgery. The steps worked brilliantly for us and involving patients, the public and families using this approach genuinely transformed the website.”

Professor Jo Rycroft-Malone, Director of NIHR Health Services and Delivery Research (HS&DR) Programme, said: “This project is an excellent example of NIHR research with impact. Working together co-productively, researchers and patients have developed an evidence informed resource that will be useful to many. Generating impact from the research NIHR funds is critical, therefore this team’s work including this practical guide to public engagement is to be applauded.”

The new guide is available on the Sense about Science website.

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