Putting it into practice: Patient and public involvement in the development of user-friendly patient information sheets
2014 Conference
Abstract: Informed consent to participate in research studies requires that all participants “should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision” (Nuremberg code, 1947). In practice this means that people should be given information which allows them to understand exactly what the research involves for them, including harms and benefits, before they agree to take part.
The patient (or participant) information sheet plays a vital part in ensuring that people can give informed consent. It provides the information required to allow for informed consent, in a written hard-copy, or paper, format.
However, research has shown that people do not always understand the information given. This is because it may be poorly written. It may include complex terms and technical words. It may also be poorly presented.
‘Performance-based user testing’ has been used to improve the patient information sheet. This method is based on how well people pick up on and understand key points in the information.
We have followed the recommendations from this previous work to develop our own patient information sheets. In the process, we fine-tuned the sheets following our own lay review. We have adopted the new style of information sheets across our unit. These have been approved by the Research Ethics Committee.
This poster will raise discussions around how patient information sheets should be presented. Also, it will show how members of the public can play a central part in ensuring participants can give informed consent.
Authors
Hall ~ Deborah
Deb Hall is the Director and Research Lead (Tinnitus Etiology and Management) of the National Institute for Health Research (NIHR) Nottingham Hearing Biomedical Research Unit (BRU) in Hearing. She has worked closely with the British Tinnitus Association since 2004 and is also a Trustee. Through this work she is committed to helping people with tinnitus to improve their quality of life.
View all articles by this authorHigton ~ Fred
Patient and Public Involvement Lay Member. Fred Higton was educated as a chemist and has worked in the Pharmaceutical Industry for over 30 years. He suffered a stroke in 2011 and since has been working as a volunteer, including lay assessing, in stroke and medical research-based organisations.
View all articles by this authorHorobin ~ Adele
Dr Adele Horobin completed her PhD at the University of Nottingham in 2004. Adele moved into management and, in 2013, became Patient and Public Involvement and Engagement Manager at the National Institute for Health Research (NIHR) Nottingham Hearing Biomedical Research Unit. Adele is leading on the lay assessor learning and support programme for the East Midlands.
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