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Lymphoma and Pets
Cancer trial information sheets are their own worst enemies, says study
Cancer trial information sheets--the leaflets used to inform potential participants in a cancer clinical trial-- are shooting themselves in the foot, according to research published in the journal Sociology of Health and Illness.
Instead of encouraging participation among potential patients, these information sheets that give the participant much of the required information needed before committing to a clinical trial are "far too long, incomprehensible and ... intimidating."
Ultimately many patients barely read it and instead turn to their doctor or health care professionals to discuss the issue.
Researchers determined that these information sheets are missing the mark; they aren't speaking to the needs of the patients for as much understandable information as possible without being overwhelmed, nor are they written in non-jargon that's understandable. Rather, patients say that they're written like legal forms that go above and beyond to protect the doctors and clinics from legal problems.
The UK's Health Research Authority (HRA) commented on the study, saying that body "recognizes the evident dissatisfaction around participant information sheets. It is currently rewriting guidance that will focus on key principles rather than proscriptive instruction. It will work with public, patients, researchers and others involved in regulation and governance of research to look at all aspects of seeking consent, beyond the written information provided. We will support our work with evidence and consensus (where it exists) from the fields of research, ethics and decision-making."
Source: Medical News Today