Patient experiences with research in a tertiary care setting

Data from a number of studies indicate that patients' understanding and recall of information presented during the informed consent process are poor. The purpose of this survey was to determine patients' attitudes about, desired knowledge of, and involvement in clinical research in a tertiary medical care setting. A self-report questionnaire was completed by 277 patients on the oncology, obstetrics/gynecology, medicine, neurosciences, surgery, and ophthalmology services of a large tertiary care facility. While most respondents had generally positive attitudes about research, relatively few were aware that human subjects approval processes existed or that nurses conducted research. Areas of additional knowledge needed included specific information about purposes of research and risks and benefits. Individuals with higher levels of education appeared more willing to participate in clinical research even when personal benefit was minimal.