Researchers and health-care providers have long worried about how to ensure patients and potential subjects understand treatment and research options. Two medical doctors weigh in in a recent New York Times piece, acknowledging the shortcomings of current methods. (Example: “Over your lifetime of seeing us, we have trained you that we will look impatient and concerned if you say you didn’t understand something or if you have a lot of questions. After all, we’re busy and have other patients to see. Shame on us.”) They also have some ideas for how people can improve this exchange of information.
Please note the language throughout, but particularly in the first two paragraphs. If doctors, and researchers, were brutally honest, they’d tell you right off the bat that some of the treatment or research options they’re proposing might work, or they might kill you. When was the last time you heard a doctor be that up-front about side effects?
The authors’ tips for improving the consent process apply regardless of whether it’s research or treatment we’re talking about. These tips are geared to patients/subjects, groups who typically won’t read our blog (alas!). However, we encourage you to give some thought to how these pointers can be incorporated into the research informed consent processes we’re designing (researcher side), or approving (IRB member side).
The New York Times will let you access a certain number of articles for free each month. If you have trouble accessing the above article, please let Edith Paal in the IRB office know (paalediths@uams.edu) and she’ll get you a copy.