Paediatric Event Case Studies IHKB

Getting feedback on a Patient Information Sheet to check understanding and ensure accessibility

By line: A Research Café case study by Sarah Stimpson, Dean McCallion and Ruchi Wadhwa 

Story editor: Lizzie Blunt - MSc Science Communication work placement student 

Public Health Research · Patient & Public Involvement · Children & Young People 

“It was such a valuable experience to attend the Research Café and discuss our project” 

More about IHKB  

The Imperial Health Knowledge Bank will be an asset to research with it’s collection of samples from individuals who are interested in taking part in health research studies. The data provided by these individuals and their samples will help to increase understanding of health conditions, disease detection, and developing tests and treatments. As part of the process, patients taking part are given Patient Information Sheets, to inform them about the project and process. 

Why did Sarah, Dean and Ruchi bring this project to the Research Café? 

Having only received parent and guardian feedback for their children’s Patient Information Sheet, the Research Café was a great opportunity to work with children about a resource intended for them. It was a space for them to discuss the content and gain insight into what was appropriate and understandable across different age groups. The team also noted that public involvement of this kind is essential if they are to expand the Knowledge Bank into paediatrics.

 What did the team ask the public? 

Equipped with a plain English summary and an engagement plan, the team sought feedback on their presentation and how to shape their approach and potential activities.   

What the team heard 

The Patient Information Sheets (PIS) were assessed and graded by the attendees, and revealed themes including language complexity, anxiety around blood collection, the need for more visuals, confusion around specific sections of the document. 

Priority themes identified: “Knowledge bank” concept, text density and errors in the alternative PIS 

Conclusion they made from the feedback: the original PIS is a reasonable starting point, but revisions needed to make it accessible for a child audience 

Impact 

“We received so many great comments and suggestions to how we could improve our PIS and will use these to redesign our child facing documents” 

The feedback and discussions the team had with the children at the event will impact the design of their PIS.