Making Informed Consent Accessible | Cancer Today
peter.suber's bookmarks 2022-11-18
Summary:
"Confusing informed consent forms are a common barrier to clinical trial participation. Researchers ask how they can be better designed for patients....
One likely barrier is the informed consent form itself. Voluntary consent is legally required for patients to enroll in a study, but what are you signing up for, exactly? It’s not always easy to tell. “Informed consent forms, which outline the risks and benefits of an interventional clinical trial to a patient, are overwhelming and complicated,” says Bellinda King-Kallimanis, director of patient-focused research at LUNGevity Foundation in Bethesda, Maryland....
“We generally found that informed consent forms are long, an average of 21 pages, and that information for deciding whether to participate in the trial, such as potential side effects, was hard to find. And informed consent forms are generally written at a 10th grade reading level, which may be too high for many people,” King-Kallimanis says. The average U.S. reading level is seventh to eighth grade, according to the Center for Plain Language...."