Patients׳ information needs of clinical trials with focus on Internet usage: Questionnaire survey in Japan

Abstract

BackgroundClinical trials are essential components of modern health care for the process of translating basic research into clinical practice. However, there is not well known about patients׳ information needs of clinical trials. ObjectiveThe purpose of our study was to understand the information-seeking behavior of patients about clinical trials and to determine what information patients׳ desire on websites. MethodsWe conducted a questionnaire survey between March and April 2013 of outpatients at three National Center hospitals in Japan and members of seven self-help groups for mainly intractable diseases. The questionnaire consisted of subjects׳ demographics, usage of general medical information, usage of clinical trial information, and desired items of clinical trial information on websites. ResultsOf the 2400 outpatient questionnaires, 1621 (67.5%) were returned and 1351 (56.3%) with valid information about demographic variables were eligible for analysis. In addition, of 2324 self-help group member questionnaires, 910 (39.2%) were returned and 850 (36.6%) were analyzed. The usage trends of general medical and clinical trial information were similar between the outpatients and self-help group members. However, the rate of access to clinical trial websites was not high. ConclusionsChannels of clinical trial information used by patients were similar to those used for general medical information. If clinical trial information can be as an extension of general medical information, “tie-ins” between general medical information and clinical trial information should be reinforced at offering on websites for user convenience.