I have been meaning to write this post for some time and out walking with my dogs today I was catching up on ‘Desert Island Discs’ and listened to an interview with Dame Minouche Shafik, former Deputy Governor of the Bank of England and now Director of the London School of Economics. Interestingly she began her interview talking about the importance of communication and how reading an average Bank of England report required 13 years of education, which meant that the vast majority of the British public couldn’t understand what they were talking about. What I found even more interesting was how they turned to the famous works of Dr Seuss and his clear writing style that encouraged children to read across the world. It dawned on me that we all need to make a real effort to try and simplify our language and be clear regardless of what area we are working in and this certainly applies to health research in child health.
Children’s Health Research – Patient Information Sheets
Writing for patients and the public about a particular piece of health research or clinical trial is quite a difficult task for many researchers, whose specialised knowledge can often hinder effective communication. The task is even more challenging when preparing clinical trial information for children and young people. I have argued for many years that involving young people in the development of clinical trial materials improves their quality and ensures that they are fit for purpose.
Since setting up the first GenerationR Young Person’s Advisory Group in Liverpool at Alder Hey Children’s Hospital, the group have reviewed over 100 patient information leaflets aimed at young people. More often than not, the information the group receive is too long and complex, adding unnecessary barriers for children and their families invited to take part in clinical research. The most common problems the group have identified are:
- Information is too long (18+ pages in some cases for children 7 years old)
- Too much jargon
- Too complex
- Too technical in parts
- Lacks colour
- Looks dull and uninviting
- Often patronising
In other words most of it is all ‘Gobbledegook’ (official definition: pretentious or unintelligible jargon, such as that used by officials) and despite many attempts to provide advice to researchers about what young people and families want from the information, it was clear we had a long battle on our hands.
However, there was light at the end of the tunnel when I was invited to be co-investigator on a study called TRECA, (TRials Engagement in Children and Adolescents) funded by the NIHR Health Service & Delivery Research UK Program. The aim of the project is to develop online multimedia interventions to describe research opportunities to young people and their families. The findings and outputs from this study could revolutionise the way that we inform children and young people about research.
The project has developed two multimedia information resources (MMIs), one for younger children and parents, and one for older children, adolescents and parents. The MMIs are websites, which contain a mixture of text, video, animations and diagrams.
The MMIs have been developed with the help of children and adolescents with long-term health conditions (including members of GenerationR Liverpool and Birmingham Group), parents and clinicians, researchers and by the Patient and Parent Advisory Group. The Patient and Parent Advisory Group have also helped to review the content and design of the MMIs.
Without accessible and child appropriate information researchers will struggle to recruit children and families to research studies, thus impacting on the advancement of healthcare for children. Young people have a key role to play in ensuring this doesn’t happen. It seems we can all learn from Dr Seuss?
Click here for updated guidance about what young people want from Patient Information Sheets and Top Tips can be found here.
For further information about the TRECA study:
Or contact the team on:
PPIE Lead for TRECA, Jenny Preston – email@example.com
TRECA study manager, Jackie Martin-Kerry – firstname.lastname@example.org
TRECA study research fellow, Rebecca Sheridan – email@example.com
You can also follow Jackie on Twitter – @JMartinKerry
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