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How can we really understand informed consent?

April 3, 2011   GUEST BLOG POST by Aimee Hilton

You are told you have a left clavicle contusion and your face just screams “What?” You go home to research and find you simply have a bruised collarbone, i.e your shoulder is going to hurt for a little while. Doctors may forget that they spent eight plus years in education learning the medical jargon that most of their patients do not understand. So when the patient has an important decision on the line, like whether or not to participate in a clinical trial based on their illness, how do we organize the information to make an informed decision? When we can’t understand words like randomization and placebo, how can we really understand the informed consent?

A study performed by Jefford et al. (2009), looked at how well patients understood the clinical trial they recently enrolled in.  102 patients who signed up for a clinical trial concerning cancer within the last two weeks participated in the research. The most important results showed that doctors needed to ask specific questions pertaining to the patient’s understanding of the trial, instead of simply “Do you understand”.  Using a method known as “the teach back method” allows the patient to understand and develop questions.  As a patient, if making a decision about a clinical trial, be sure to restate the clinical trial process and informed consent to your doctor. It will make sure you understand and they know you understand.

Patients should also receive written information and a recording of the conversation discussing the clinical trial. This allows the patient to go back and look over any information they found confusing or did not comprehend. Doctors also should be sure to discuss the standard treatment and other possible treatments in the trial. Patients should be aware of all options and possibilities throughout the trial.

It may seem that clinical trial information is overwhelming. However, if the doctor presents the information in an organized process, the patient will be more likely to understand and receive enough information to understand the informed consent they need to sign. Clinical trials are very important for the advancement of science and treatments. If doctors can help patients have a better understanding of the trial, hopefully more patients will be willing to participate. 

Jefford, M. Mileshkin, L. Matthews J. et al. Satisfaction with the decision to participate in cancer clinical trials is high, but understanding is a problem. (2009) Support Care Cancer, 19, 371-379.

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Author: Roxanne

I have always loved to learn. After years of trying to pick a major as an undergraduate, I met a professor who guided me to graduate school. And from graduate school, I learned that I could always go to school and keep on learning. And so I have...

One thought on “How can we really understand informed consent?”

  1. I completely agree with this article that Aimee posted. Luckily my doctor is my Uncle, so I tend to have a very open communication with him, I ask him tons of questions to reduce uncertainty. Patients that are talking with their doctor about their health want to be sure they understand clearly what is being said without any confusion. I can’t imagine how it might be if my doctor were not my Uncle. I know sometimes I do shy away from asking some questions, because I do not want to pry or make it seem like I don’t think he is knowledgeable.

    I really like the idea of the teach back method. This will allow doctors to make sure that their patients do indeed understand their diagnosis or whatever the situation may be. I also think that doctors need to be more aware of how much medical jargon they are using, and try to put it in Layman’s terms before they try to get their patient to teach back what was just told to them.

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