Knowledge and Perception about Clinical Research Shapes Behavior: Face to Face Survey in Korean General Public

Abstract

Considering general public as potential patients, identifying factors that hinder public participation poses great importance, especially in a research environment where demands for clinical trial participants outpace the supply. Hence, the aim of this study was to evaluate knowledge and perception about clinical research in general public. A total of 400 Seoul residents with no previous experience of clinical trial participation were selected, as representative of population in Seoul in terms of age and sex. To minimize selection bias, every fifth passer-by was invited to interview, and if in a cluster, person on the very right side was asked. To ensure the uniform use of survey, written instructions have been added to the questionnaire. Followed by pilot test in 40 subjects, the survey was administered face-to-face in December 2014. To investigate how perception shapes behavior, we compared perception scores in those who expressed willingness to participate and those who did not. Remarkably higher percentage of responders stated that they have heard of clinical research, and knew someone who participated (both, P < 0.001) compared to India. Yet, the percentage of responders expressed willingness to participate was 39.3%, a significantly lower rate than the result of the India (58.9% vs. 39.3%, P < 0.001). Treatment benefit was the single most influential reason for participation, followed by financial gain. Concern about safety was the main reason for refusal, succeeded by fear and lack of trust. Public awareness and educational programs addressing these negative perceptions and lack of knowledge will be effective in enhancing public engaged in clinical research.

Knowledge of and attitudes toward clinical trials in Saudi Arabia: a cross-sectional study

“…The current results are supported by similar findings in studies conducted in healthcare settings (with patients and/or their families) within the KSA 17–20. The reason may be the lack of institutional and national campaigns promoting CTs 5 25…”

Cancer patients’ perceptions of factors influencing their decisions on participation in clinical drug trials: A qualitative meta‐synthesis

“…A Saudi Arabian questionnaire study also reported this (AL‐Tannir et al, ). All three studies have several limitations regarding their generalisability to our findings, including choice of quantitative research method and the fact that the participants were not necessarily cancer patients or had not necessarily been offered trial participation (AL‐Tannir et al, ; Burt et al, ; Choi et al, ).…”

“…Also, a questionnaire study concluded that altruism was the most influential factor for the Indian population (Burt et al, ). Both studies reported that the populations had a substantial distrust towards clinical trials (Burt et al, ; Choi et al, ). A Saudi Arabian questionnaire study also reported this (AL‐Tannir et al, ).…”

Quality of informed consent in clinical trials

“…The authors argued that perceiving a trial as meaningful may, in fact, be associated with previous knowledge, and not information obtained just before the trial. The authors of the above-cited study also placed great importance on the Internet and media as carriers of such information as the majority of research participants searched for information on the Internet [19]. In terms of informed consent, recently a trend has been observed of posting ICFs on-line as a method of acquainting the future research participants with the trial, and simultaneously facilitating the decision-making process.…”