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Useful participant information - from specialist to non-specialist language

Since spring 2008, KCL has worked on the project "Improving participant information" with the Science Ethical Committees in the Central Denmark Region. The objective of the project was to improve the written information for potential participants in biomedicinal experiments.

In the so-called participant information, potential participants are informed about the content of the experiment and the potential risks. It is part of the researchers' application for approval of biomedicinal projects. Writing the participant information may be quite a challenge for the researchers. The law defines exactly which information to give - and at the same time it should be written in a language that is easy to understand.

From the doctor's latin to everyday language
It was the ambition of the project to develop an IT-based solution that could help reseachers to communicate clearly and avoid the cryptical medicinal terms. The solution was gradually developed and tested. A part of the solution was a web-based dictionary, where specialised language was translated into everyday language. Why write seasonal allergic rhinitis, when you might just as well use hay fever?

Search for researchers
The IT solution was tested in spring of 2009 by researchers writing an application to the Science Ethical Committees in the Central Denmark Region for approval of experiments. The web-based solution consisted of a content template and a manual indicating what to include in the participant information and how to write the text. During the project KCL also offered participating researchers free language review of their participant information.


Illustration: Grafiker Gitte Skovgård Jensen

Faster approval and more participants
Good participant information containing the necessary information is crucial. The Science Ethical Committees often return applications on the grounds that the participant information is too poor. That results in a more time-consuming approval process for the committees - and extra work for the researchers.

Writing documents with easily read participant information may also ensure that potential participants can make a much more informed decision to participate or not. It is crucial to get a sufficient number of participants for an experiment, therefore it is very important to ensure that nobody declines solely on the basis of not understanding the text.

After the project
Succesfull test of the idea in collaboration with the Science Ethical Committees in the Central Denmark Region led KCL to develop a piece of language technology software - Mark-Up - that performs automatic screening of word documents uploaded to a server and suggests changes. KCL is now working to implement the software.

Contact
For more information, please contact Project Manager Lone Jørgensen, e-mail: lonej@asb.dk, Phone: +45 8948 6153